"Medicine, Faculty of"@en . "Population and Public Health (SPPH), School of"@en . "DSpace"@en . "UBCV"@en . "Kwan, Brenda"@en . "2009-05-05T18:27:15Z"@en . "1998"@en . "Master of Science - MSc"@en . "University of British Columbia"@en . "Governments world-wide have shifted towards the concept of public participation in health decision\r\nmaking. In Vancouver, British Columbia, 7 geographically-based Community Health Committees\r\n(CHCs) and 8 population-based Population Health Advisory Committees (PHACs) have been set\r\nup as public involvement committees to assist and advise the Vancouver/Richmond Health Board\r\n(V/RHB). The activities of the committees include health planning, involving the community, and\r\nevaluating health services. The purpose of this study was threefold: to explore the clarity of the\r\nstated roles and responsibilities for the committees; to explore the level of participation of the\r\ncommittees; and to compare and contrast the perceived vs. stated roles and responsibilities of the\r\ncommittees. A written questionnaire was distributed to all committee members, and to the staff who\r\nwork with them (N=123). The questions were written to reflect the stated roles and responsibilities\r\nof the CHCs and PHACs. Thirty-four questionnaires were returned (27.6%). Respondents felt the\r\nstated roles and responsibilities were, on average, moderately clear; however, the words \"assist and\r\nadvise\" were not clear and led to uncertainty about how the committees would specifically be\r\ninvolved. Respondents also felt the committees should have had a greater level of involvement than\r\nthey actually had at the time of the survey. Finally, respondents felt they had been most involved\r\nin health planning and least involved in evaluating health services. Mobilizing public interest in\r\nparticipation had sometimes been difficult. Subsequent focus group sessions verified the results of\r\nthe questionnaire, despite its low response rate. The implications of these findings suggest the\r\nV/RHB may facilitate the public participation process by: 1) further clarifying the roles and\r\nresponsibilities of the committees - orientation to roles and topics relevant to the committee\r\nactivities; 2) by providing more direction to the committees especially when it is requested; and 3)\r\nby soliciting more public interest in participating through a renewed region-wide publicity effort."@en . "https://circle.library.ubc.ca/rest/handle/2429/7890?expand=metadata"@en . "9676496 bytes"@en . "application/pdf"@en . "ROLES A N D RESPONSIBILITIES OF PUBLIC I N V O L V E M E N T COMMITTEES IN THE V A N C O U V E R / R I C H M O N D H E A L T H REGION: HOW A R E THINGS GOING? by B R E N D A K W A N B.Sc , The University of British Columbia, 1993 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF M A S T E R OF SCIENCE in THE F A C U L T Y OF G R A D U A T E STUDIES (Department of Health Care and Epidemiology) We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH C O L U M B I A April 1998 \u00C2\u00A9BrendaKwan, 1998 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of WJL&Xfr^ & / e k he ]dsju^p Cv< The University of British Columbia Vancouver, Canada Date April t \u00C2\u00BB , lilt DE-6 (2/88) ABSTRACT Governments world-wide have shifted towards the concept of public participation in health decision making. In Vancouver, British Columbia, 7 geographically-based Community Health Committees (CHCs) and 8 population-based Population Health Advisory Committees (PHACs) have been set up as public involvement committees to assist and advise the Vancouver/Richmond Health Board (V/RHB).: The activities of the committees include health planning, involving the community, and evaluating health services. The purpose of this study was threefold: to explore the clarity of the stated roles and responsibilities for the committees; to explore the level of participation of the committees; and to compare and contrast the perceived vs. stated roles and responsibilities of the committees. A written questionnaire was distributed to all committee members, and to the staff who work with them (N=123). The questions were written to reflect the stated roles and responsibilities of the CHCs and PHACs. Thirty-four questionnaires were returned (27.6%). Respondents felt the stated roles and responsibilities were, on average, moderately clear; however, the words \"assist and advise\" were not clear and led to uncertainty about how the committees would specifically be involved. Respondents also felt the committees should have had a greater level of involvement than they actually had at the time of the survey. Finally, respondents felt they had been most involved in health planning and least involved in evaluating health services. Mobilizing public interest in participation had sometimes been difficult. Subsequent focus group sessions verified the results of the questionnaire, despite its low response rate. The implications of these findings suggest the V / R H B may facilitate the public participation process by: 1) further clarifying the roles and responsibilities of the committees - orientation to roles and topics relevant to the committee activities; 2) by providing more direction to the committees especially when it is requested; and 3) by soliciting more public interest in participating through a renewed region-wide publicity effort. TABLE OF CONTENTS ABSTRACT . -ii-TABLE OF CONTENTS -iii-LIST OF TABLES -ix^ LIST OF FIGURES -xxi-ACKNOWLEDGEMENTS -xxii-LIST OF ACRONYMS -xii-INTRODUCTION i 1.1 THE SHIFT TOWARDS INCREASED PUBLIC PARTICIPATION FOR H E A L T H dz 1.2 WHAT'S HAPPENING IN CANADA? -Iz 1.3 WHAT'S HAPPENING IN BRITISH COLUMBIA? -Az 1.3.1 The Report of the British Columbia Royal Commission on Health Care and Costs -Az 1.3.2 New Directions for a Healthy British Columbia ^ 1.3.3 A Guide for Developing Community Health Councils and Regional Health Boards {U 1.3.4 Bi l l 45 - Health Authorities Act 1.3.5 Processes, Benchmarks and Responsibilities for Developing CHCouncils and RHBs -_9z 1.3.6 Minister's Health Forum \". -11-1.3.7 The Interim Regional Steering Committee (IRSC) -12-1.3.8 Designation of the Vancouver Health Board, Community Health Committees, and Population Health Advisory Committees -15-1.3.9 Stated Roles and Responsibilities for the Community Health Committees and Population Health Advisory Committees -15-1.3.10 What Have the Community Health Committees Been Doing Since Their Designation? -16-1.3.11 What Have the Population Health Advisory Committees Been Doing Since Their Designation? -23-LITERATURE REVIEW =2^ 2.1 POLICY DEVELOPMENT THEORY -2Sz -in-2.1.1 The Phases and Players of Policy Development -25-2.1.2 How Are Policies and Decisions Made? -27-2.1.2.1 Rationalism and Incrementalism -28-2.1.2.2 Strengths and Weakness of Rationalism and Incrementalism -28-2.1.2.3 Mixed Scanning -2$z 2.1.3 The \"Perfect Policy Implementation\" -30-2.1.4 Public Participation for Health and Policy Processes -31-2.1.5 Participation in the Broader Context of Democracy and Power -31-2.1.6 Summary of Public Participation and Policy Development -33-PUBLIC PARTICIPATION - ISSUES A N D CONCEPTS -33-2.2.1 Putting \"Public Participation\" into Perspective -33-2.2.1.1 Rifkin's (1981) Framework: 4 Approaches to Public Participation . . -35-2.2.1.2 Rothman and Tropman's (1987) Framework: 3 Approaches to Community Organization -37-2.2.1.3 Charles and DeMaio's (1993) Framework: Key Dimensions of Lay Participation -37-2.2.1.4 Connor's (1988) Framework: A \"New\" Ladder of Citizen Participation -41-2.2.1.5 Potapchuk's (1991) Framework: Building Consent -43-2.2.1.6 Rosener's (1977) Technique/Function Matrix: Tying Strategy to Function -44-2.2.1.7 Wandersman's (1981) Framework: Clarifying Participation and How It Works -46-2.2.1.8 Frankish's (currently ongoing) Framework: Measures of Community Participation in Health System Decision Making -47-2.2.1.9 Decentralization/Regionalization and Public Participation -47-2.2.1.10 Final Comments on Putting Public Participation into Perspective A9z 2.2.2 Reasons for and Against Public Participation in Health Decision Making . . . -50-2.2.3 Issues in Public Participation -52-2.2.3.1 Public Interest in Participating -53-2.2.3.1.1 Mobilizing the Public z5Jb 2.2.3.1.2 Remaining on a Board/Committee -54-2.2.3.2 Creating Boards/Committees z55z 2.2.3.2.1 Method of Selection z55z 2.2.3.2.2 Selection Criteria =5f> 2.2.3.3 Representation of the Public - Myth or Reality? -56-2.2.3.4 Roles and Responsibilities of Public Participants on Boards/Committees -6Qz 2.2.3.4.1 The Purpose of Public Participation ^Xh 2.2.3.4.2 Representation z6L 2.2.3.4.3 Level of Participation -61-2.23 A A Topics/Areas of Responsibility for Public Participants -Mz .2.2.3.5 Planning and Managing Public Participation -66-2.2.2.5.1 Planning for Public Participation (Creighton 1992) . . -66--iv-2.2.3.5.2 Training and Orientation -68-2.2.3.5.3 Resources for Public Participation -69-2.2.3.6 Evaluating Public Participation -70-2.2.2.6.1 Rosener's (1978) Evaluation Research Methodology for Measuring the Effectiveness of Citizen Participation . -72-2.4 S U M M A R Y - LITERATURE REVIEW -73-THE THESIS - APPROACH AND METHODOLOGY -74-3.1 RATIONALE -J^ 3.2 OBJECTIVES J5z 3.3 M E T H O D O L O G Y -J5z 3.3.1 Case Study Approach - Rationale -75-3.3.1.1 Weaknesses -76-3.3.1.2 Strengths -76-3.3.1.3 Comments on Use -76-3.4 D A T A COLLECTION METHODS =77^ 3.4.1 Source Document Review - Chronology and Description -77-3.4.2 Semi-structured Written Questionnaire -78-3.4.3 Development of Survey Questions -79-3.4.4 Distribution of Questionnaires -82-3.4.5 Feedback Sessions -83-3.5 ANALYSIS OF RESULTS =84= 3.6 DISSEMINATION OF FINAL RESULTS -84-QUESTIONNAIRE RESULTS =85= 4.1 RESPONSE R A T E . . . =85= 4.2 DEMOGRAPHIC CHARACTERISTICS =87= Length of Membership at Time of Survey . ; -87-What is the nature of your position on the PHAC? -88-Age -88-Question: What is your gender? -89-Question: To what ethnic or cultural group(s) do you belong? -89-Question: What is your highest level of education attended or completed? Please tick one of the following -90-Question: What is your current marital status? -90-Question: What is your total household income (gross) for this year? Please tick one of the Question: What is your total household income (gross) for this year? Please tick one of the following -91-Question: What is your current work/employment status? Please tick one or more of the following . -91-Question: If you are employed, what is your profession/occupation? -92-4.3 QUESTIONS C O M M O N TO A L L SURVEYS 9^2= Question: The CHCs/PHACs \"assist\" and \"advise\" the Board in a variety of activities. Please describe what you think \"assist\" and \"advise\" mean . -93-Question: Shared governance, not management, is emphasized as the role of the CHC/PHAC. Please describe the difference between governance and management. : =93= Question: For the tasks listed, what level of involvement does the CHC/PHAC currently have, and what level should it have? -94-Question: Overall, which form of authority do you think the CHC/PHAC should have? Do you have any comments on your response above? -96-Question: Describe what you think the overall roles should be for the following stakeholders in health care decision making -97-4.4 CHC-SPECIFIC QUESTIONS =99= Question: Rate the clarity (vocabulary, vagueness, scope of involvement) of each role/responsibility. If the role/responsibility is not \"totally clear\" (not a rating of 5), please explain why -99-Question: Since you became a CHC member/CD, has the Board identified additional purposes and responsibilities for the CHCs? If yes, what additional purposes/responsibilities were identified? -100-Question: How complete is your C H C s community health plan (not a regional health plan)? -101-Question: CHCs were created in May 1995. Is the degree of completion of your C H C s community health plan less than, the same as, or more than what you would have expected by now? ...\" -102-Question: Indicate the degree of completion of each item that may be included in your C H C s community health plan -103-Question: Do you have any comments on your responses above? (items included in health plan) -108-Question: Integration of health services: how involved has the CHC been with the following activities in the CHC area? List examples of the C H C s involvement. -108-Question: For areas within the C H C s boundaries, how much assistance has the CHC provided for the following? Please explain your answers, or provide examples of how the CHC has assisted the NHGs in the CHC area -109-Question: Below is a list of activities related to provincial, regional, and community standards for health service delivery. How much assistance and advice has the CHC provided to the Board for these activities? -111-4.5 PHAC-SPECIFIC QUESTIONS -112--vi-Question: Rate the clarity (vocabulary, vagueness, scope of involvement) of each role/responsibility. If the role/responsibility is not \"totally clear\" (not a rating of 5), please explain why -112-Question: To what degree has the PHAC contributed to a regional health plan? The PHAC may have made contributions in ways listed below. Rate the P H A C s contributions to the regional health plan -113-Question: Do you have any comments to your responses above? -114-Question: The PHAC may have informed or advised the Board on the following. Rate the amount of information/advice. Explain your answers, or list examples of information or advice -115-Question: The PHAC you work with may have established formal relations with the groups listed below. Indicate how established these relations are and describe the most useful aspects of it -1.15-Question: How representative of the identified population is the PHAC? How do you tell whether or not the PHAC is representative of the identified population? . . . -116-Question: How much has the P H A C assisted and advised the Board in the following activities? Rate the level of assistance and advice. Explain your answer, or provide examples of ways in which the PHAC has assisted or advised the Board. . . -117-4.6 ADDITIONAL COMMENTS -117-RESULTS FROM FEEDBACK SESSIONS -120-Stated Roles and Responsibilities -121-Overall Roles : -121-Level of Involvement -121-Health Planning -122-Service Integration (CHCs) -123-Involving the Community/Identified Population -124-Committee Membership -124-Links with Other Regional Structures -125-General Feelings and Principles -125-Other -126-Comments on the Questionnaire and Presentation of Results -126-5.1 S U M M A R Y OF RESULTS (SURVEY A N D F E E D B A C K SESSIONS) -127-DISCUSSION AND CONCLUSIONS -129-6.1 PUTTING PUBLIC PARTICIPATION INTO PERSPECTIVE -129-6.2 A P P R O A C H TO PUBLIC PARTICIPATION IN BRITISH C O L U M B I A A N D THE V A N C O U V E R / R I C H M O N D H E A L T H REGION -131-6.3 PUBLIC INTEREST IN PARTICIPATING -134-6.4 REPRESENTATION OF THE PUBLIC -136--vii-6.5 PLANNING A N D M A N A G I N G PUBLIC PARTICIPATION -138-6.5 E V A L U A T I N G PUBLIC PARTICIPATION -139-6.6 C L A R I T Y OF ROLES A N D RESPONSIBILITIES -141-6.7 ACTIVITIES OF THE CHC/PHAC -144-6.7.1 Health Planning -144-6.7.2 Other Activities of the CHCs/PHACs -147-6.8 C A V E A T S OF THE STUDY -148-6.9 S U M M A R Y , IMPLICATIONS, A N D CONCLUSIONS -149-Putting Public Participation into Perspective -150-Clarity of Stated Roles and Responsibilities -150-Health Planning -151-Involving the Community/Identified Population -152-Committee Involvement in Evaluating Health Services -153-Evaluating the Effectiveness of Public Participation -153-Conclusions -153-REFERENCES -155-APPENDIX A: MAP OF COMMUNITY H E A L T H COMMITTEES IN VANCOUVER/RICHMOND -162-APPENDDC B: ROLES AND RESPONSIBILITIES OF COMMUNITY HEALTH COMMITTEES -163-APPENDIX C: ROLES AND RESPONSIBILITIES OF POPULATION H E A L T H ADVISORY COMMITTEES -164-APPENDIX D: COMMUNITY H E A L T H COMMITTEE SEPTEMBER 1997 GOVERNANCE DOCUMENT -166-- V l l l -LIST OF TABLES Table 1: Comparison of devolved authorities for health care in Canada's provinces (adapted from Lomas et al. 1997) -3^ Table 2: Suggested roles and responsibilities of Community Health Councils (CHCouncils), Regional Health Boards (RHBs), and the British Columbia Ministry of Health (MOH) under New Directions in 1993 Table 3: Some generic questions implicit in policy-making (adapted from Milio 1991) . . . . -26-Table 4: Suggested indicators to describe and analyze the scene and players in the policy-making process -27-Table 5: Comparison of 4 approaches to public participation (adapted from Rifkin 1981) . . -36-Table 6: Description of Arnstein's Ladder of Participation (adapted from Arnstein 1969) . . -40-Table 7: Description of rungs on Connor's (1988) \"new\" ladder of citizen participation . . . -42-Table 8: Potapchuk's (1991) linking of citizen participation techniques to the levels of shared decisionmaking -44-Table 9: Rosener's (1977) Technique/Function Matrix -45-Table 10: The 4 types of decentralization (from Minister of National Health and Welfare 1993) '. -48-Table 11: Reasons for having citizen involvement (the reasons listed are not necessarily empirically supported, nor are they necessarily advocated by the authors listed) . . . . -51-Table 12: Reasons not to have citizen involvement (the reasons listed are not necessarily empirically supported, nor are they necessarily advocated by the authors) -52-Table 13: Descriptions of some areas of responsibility as extracted from the literature . . . . -63-Table 14: Academic and community uses of the Thesis for non-committee-specific questions : -80-Table 15: Academic and community uses of the Thesis for CHC-specific questions -81-Table 16: Academic and community uses of the Thesis for PHAC-specific questions -81-Table 17: Response rates for the groups surveyed -86-Table 18: Work/employment status of respondents -92-Table 19: Respondents' current (at the time of the survey) perceptions and their preference of levels of involvement for various tasks -95-Table 20: Preferred overall level of involvement for CHCs/PHACs -97-Table 21: Average ratings of clarity of their roles and responsibilities of CHCs -100-Table 22: CHC average rating of involvement for integration of health services -109-Table 23: CHC average ratings of assistance and advice for evaluation -111-Table 24: Average ratings of clarity of the roles and responsibilities of PHACs -113-Table25: Average ratings of PHAC contributions to the regional health plan -114-Table 26: PHAC average ratings of information and advice to the Board -115-Table 27: PHAC average ratings of establishment of formal relations with various groups -115-Table 28: PHAC average ratings of assistance and advice on evaluation to the Board . . . . -117--IX-LIST OF FIGURES Figure 1: List of activities of the CHCs and PHACs since their designation . -17-Figure 2: Draft matrix representing the core roles of governance for the Vancouver/Richmond Health Board and the Community Health Committees -22-Figure 3: The 3 key dimensions of Charles and DeMaio's (1993) framework of lay participation =38; Figure 4: Connor's (1988) \"new\" ladder of participation -42-Figure 5: Wandersman's (1981) framework of participation in community organizations . . -46-Figure 6: Rosener's (1978) Participation Evaluation Matrix -72-Figure 7: Length of membership/employment (N=34; QU=question unanswered) -87-Figure 8: Nature of position on P H A C (N=12; QU=question unanswered) -88-Figure 9: Age of respondents (N=34; QU=question unanswered) -89-Figure 10: Highest level of education attended or completed (N=34) ; . . -90-Figure 11: Marital status (N=34; QU=question unanswered) -91-Figure 12: Total gross household income for the year 1997 (N=34; QU=question unanswered) =91= Figure 13: Additional purposes since becoming CHC members/CDs (N=21; QU=question unanswered) -101-Figure 14: Degree of completion of CHC community health plans (N=21; QU=question unanswered) -102-Figure 15: Expectation of how complete the community health plans would be (N=21; QU=question unanswered) -102-Figure 16: Health status of the population - inclusion in community health plans (N=21; QU=question unanswered) -104-Figure 17: The community's health priorities - inclusion in cornmunity health plans (N=21; QU=question unanswered) -105-Figure 18: Future health needs of residents - inclusion in community health plans (N=21; QU=question unanswered) -105-Figure 19: Local health services and programs - inclusion in community health plans (N=21; QU=questionunanswered) -106-Figure 20: Facilities in the area - inclusion in community health plans (N=21; QU=question unanswered) -106-Figure 21: Resource requirements - inclusion in community health plans (N=21; QU=question unanswered) -107-Figure 22: Reporting mechanism to the Board - inclusion in community health plans (N=21; QU=question unanswered) . -107-Figure23: Establishing new NHGs (N=21; QU=question unanswered) -110-Figure24: Supporting existing NHGs (N=21; QU=question unanswered) -110-Figure 25: Degree of P H A C contribution to regional health plan (N=15; QU=question unanswered) -114-Figure 26: PHAC representativeness of identified population (N=15; QU=question unanswered) -116--x-ACKNOWLEDGEMENTS Many thanks to the members on my Thesis Committee (Jim Frankish, Sam Sheps, and Anne Crichton). Their expertise and support have been greatly appreciated (their secretaries too!). Also many thanks to my family and friends who helped me get through it all, and to Ken Bayfield and Craig Larsen for their help in reviewing the Thesis. Finally, thanks to all the Community Developers and staff of the Vancouver/Richmond Health Board for their help in distributing my questionnaire, and to all those who took the time to fill out the pilot and final questionnaires. \u00C2\u00A9 -xi-LIST OF ACRONYMS BC British Columbia CHC Community Health Committee CHCouncil Community Health Council CHSS Community Health Services Society IRSC Interim Regional Steering Committee M O H Ministry of Health N H G Neighbourhood Health Group RHB Regional Health Board PHAC Population Health Advisory Committee V H B Vancouver Health Board (the Board) V H R Vancouver Health Region V/RHB Vancouver/Richmond Health Board (the Board) V /RHR Vancouver/Richmond Health Region - X l l -INTRODUCTION 1.1 THE SHIFT TOWARDS INCREASED PUBLIC PARTICIPATION FOR H E A L T H The concept of \"health\" has changed over the years from a medical to a biopsychosocial model, which incorporates physical, psychological, and social factors as determinants of health. The World Health Organization (WHO) in 1948 defined health as a \"state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity\". This view of health became widely accepted as it was recognized that illness was no longer considered to be only a result of infections and communicable diseases but also a result of lifestyle and the surrounding environment. With the evolving definition of health recognized by many countries including Canada, governments, citizens, and communities have shifted their approach to health and the operation of health care systems. One of the prominent approaches reflecting this conceptual evolution of health is an increase in public participation for health and in health care systems (the definition of \"public participation\" is discussed in Section 2.2.1). The prominence of public participation has been attributed to various forces. Some of these forces included: higher standards of living; higher educational levels in the population; and greater expectations by the public as communication improved (Galiher et al. 1971). Another force was the alienation people may have felt as cities and towns continued to become more developed (Siler-Wells 1988). Other forces arose from within or around health systems: frustrations with unresponsive health systems (Galiher et al. 1971) which overlooked poverty, housing, and other social problems beyond the medical model of health (Howard 1972) (Siler-Wells 1988); rising costs of health systems (Howard 1972); and government- and organization-initiated documents providing frameworks for health promotion and public participation in health. 1.2 WHAT'S HAPPENING IN CANADA? In Canada, some examples of government-initiated documents on frameworks for health promotion and public participation in health include A New Perspective on the Health of Canadians 1974 (The Lalonde Report). The Ottawa Charter for Health Promotion 1986. and Achieving Health for A l l 1986 (The Epp Report). The Lalonde Report (1974) broadened the concept of the health care system from a purely medical care organization to one that includes lifestyle, environment, and biological risk factors (Crichton et al. 1994). The Epp Report indicated that \"health for all\" can be achieved via the implementation strategiesfostering public participation, strengthening community health services and coordinating healthy public policy. Thus, an era of health promotion began with a greater focus on primary health care and prevention versus curative care only. During this time there was a general movement towards a consciousness of health and being healthy. Citizens were not oblivious to the evolving definition of, and attitude towards, health. Since the 1980s, provincial governments across Canada have initiated some form of public participation, usually concurrent with regionalization and decentralization initiatives (see Section 2.2.1.9 for a definition of decentralization). Lomas et al. (1997) have compared provincial reforms across Canada. Table 1 is adapted from their study of board members of devolved authorities for health care in Canada's provinces (backgrounds, resources, activities, motivations, attitudes and approaches). Table 1: Comparison of devolved authorities for health care in Canada's provinces (adapted from Lomas et al. 1997) . Province Start Date of Implementation Scope of Services Under Devolved AuthoritiesE British Columbia 1994 Winter Health care (institutions plus services such as home care, public health and addiction services) Alberta 1994 Summer Health care (institutions plus services such as home care, public health and addiction services) Saskatchewan 1993 Summer Health care (institutions plus services such as home care, public health and addiction services) Manitoba0 1996 Spring Health care (institutions plus services such as home care, public health and addiction services) Ontario Not devolving n/a Quebec8 1991 Fall Health and social services (health care plus community support services and social assistance) Newfoundland 1994 Spring13 Institutions (hospitals or nursing homes or both) New Brunswick 1992 Summer Institutions (hospitals or nursing homes or both) Nova Scotia 1994 Winter Health care (institutions plus services such as home care, public health and addiction services) Prince Edward Island 1993 Fall Human services (health and social services plus public housing, corrections and juvenile services) A The date of the first appointments of board members. B Quebec already had a regional structure; this was the start of reformed regional structures. c Devolved authority in Manitoba covers only rural and northern areas of the province; it does not include Winnipeg. D Regional community health boards were established on this date; regional institutional boards were initiated in the spring of 1995. E Physician services and drugs are outside of the scope of devolved authorities in all of the provinces. Except for Ontario which has shown little interest in devolving significant authority1, all provinces had started devolution processes in the 1990s. A l l of the devolved boards were responsible for local planning, setting priorities, allocating funds, and managing services for greater effectiveness and efficiency, within provincially defined core services (Lomas et al. 1997). Lomas and associates observed that a narrower scope of services (under the authority of devolved boards) usually indicated improved efficiency or increased integration and coordination as the principal objectives of reform. Thus, public participation may be an objective of reform, but not a primary one. In addition, Lomas 'However, District Health Councils, which were established in Ontario in the early 1970s, still exist today. Although these DHCs serve as advisory planning bodies to the Ontario Ministry of Health, Ontario has no province-wide mandated regionalization model. -3-et al. (1997) observed that the role of public participation in devolved authorities was unclear, partly because the difference between citizen input and governance had not been clearly nor sufficiently distinguished. \"Input\" implies participation only through advice and input to experts, whereas \"governance\" implies a pre-eminent role for the public and a lesser one for experts. 1.3 WHAT'S HAPPENING IN BRITISH COLUMBIA? In this Section 1.3, the chronology of public participation as part of the recent health reform experience in the province of British Columbia (BC) and in particular the City of Vancouver is described. The reform started with the Report of the British Columbia Royal Commission on Health Care and Costs 1991. which examined health services in BC to determine how the system worked and what was thought to be needed to improve it. Subsequently, in response to the Royal Commission, the policy New Directions for a Healthy British Columbia 1993 recommended the creation of Regional Health Boards (RHBs) and Community Health Councils (CHCouncils2) in BC. One of these boards is the Vancouver/Richmond Health Board3, which is informed by its advisory Community Health Committees (CHCs) and Population Health Advisory Committees (PHACs). 1.3.1 The Report of the British Columbia Royal Commission on Health Care and Costs The 3 volume Report of the British Columbia Royal Commission on Health Care and Costs, also referred to as the Seaton Commission and as Closer to Home, was released November 1991. The Royal Commission concluded, in its examination of how well the BC health system worked and what needed to be done to improve it, that the \"system of health care in this province is one of 2Community Health Councils, or CHCouncils, are distinguished from Community Health Committees, or CHCs, and will be explained \u00E2\u0080\u00A2 further in the chronology. 3The Vancouver/Richmond Health Board was formerly known as the Vancouver Health Board, until it was amalgamated with the Richmond Health Board in late 1996 after a review of the regionalization process in BC. -4-the best, and quite possibly the best, in the world\", but there was a \"lack of direction in health care in BC\" . There had been no overall plan for health in BC as well as a \"lack of local influence\". The Royal Commission suggested that \"community involvement\"4 is an important component of a health care system - \"decisions should be made as close to the community level as possible; local people must be allowed to shape the local system of health care delivery\". Although the report emphasized the Government's part in encouraging the creation of community advisory boards as a means for local citizens to participate by advising on the allocation of resources, it discouraged the Ministry of Health from designing the boards - these \"boards will be failures\", i.e. boards will have a greater chance of failure if the M O H designs them than if they were designed by local citizens. 1.3.2 New Directions for a Healthy British Columbia In response to the Royal Commission, the BC Ministry of Health initiated New Directions for a Healthy British Columbia in February 1993. New Directions was to provide the overall plan for health in BC that the Royal Commission concluded the province lacked. Included in New Directions was a new definition of health for BC, a shared vision, and a common mission. The health reform plan was characterized by 5 new directions, under which there were 38 priority actions. A New Definition of Health The BC Government adopted the 1984 World Health Organization definition of health: \"the extent to which an individual or group is able, on the one hand to develop aspirations and satisfy needs; and, on the other hand, to change or cope with the environment. Health is therefore seen as a 4There are many terms synonymous with or related to the term \"public participation\", of which \"community involvement\" is but one; this will be discussed further in Section 2.2.1 of this Thesis. -5-resource for everyday life, not the objective of living; it is seen as a positive concept emphasizing social and personal resources, as well as physical capacities.\" The new definition was adopted to take into account a full range of factors which affect health: quality of life, prevention of disease and accidents, and effective treatment of illness and injury. A Shared Vision and Common Mission The shared vision is one of healthy citizens and healthy communities. The mission of BC's health system is \"to promote and provide for the physical, mental, and social well-being of all British Columbians\". The 5 New Directions and 38 Priority Actions The 5 new directions were: better health; greater public participation and responsibility; bringing health closer to home; respecting the care provider; and effective management of the new health system. A major part of New Directions was the formation of Regional Health Boards (RHBs) and Community Health Councils (CHCouncils) under the directions \"greater public participation and responsibility\" and \"bringing health closer to home\". Table 2 summarizes the membership and roles and responsibilities of the CHCouncils, RHBs, and Ministry of Health under New Directions in 1993. The province would be divided into regions. In each region, there would be an RHB and several CHCouncils under each RHB. Basically, CHCouncils would make decisions at a local level, RHBs would make decisions at a regional level, and the M O H would play a supportive role. Table 2: Suggested roles and responsibilities of Community Health Councils (CHCouncils), Regional Health Boards (RHBs), and the British Columbia Ministry of Health (MOH) under New Directions in 1993 CHCouncil RHB M O H membership Individuals elected by the public and appointed by the Minister. Representatives from CHCs, and individuals appointed by the Minister. N/A roles and responsibilities Initially, primarily planning and coordinating health services, and identifying local health priorities. Over time, integration and management of services now delivered by the MOH, hospitals and health provider organizations and resource allocation for health services in the community. Absorb existing organization and agency boards to avoid an increase in administration, [with the creation of CHCouncils] Assume roles and functions of existing structures such as Regional Hospital Districts and Union Boards of Health. Initially, regional health planning and service coordination. Future, allocation of regional global budget. The budget will include funding for services delivered by the MOH and those provided by hospitals and other agencies funded by the MOH. In time, funding for medical services will also be a component of the regional global funding envelope. Provide support to regions and communities. Distribute equitable funding to regions, establishing provincial policies and plans, setting standards, monitoring outcomes, and carrying out evaluations. Continue to provide services that are provincial in scope. Ensure equitable provision of highly specialized services to all residents of the Province. 1.3.3 A Guide for Developing Community Health Councils and Regional Health Boards In May 1993, the M O H published A Guide for Developing Community Health Councils and Regional Health Boards to provide ideas on establishing these health authorities in B.C. Five steps were proposed: \u00E2\u0080\u00A2 create community awareness; \u00E2\u0080\u00A2 form a planning group; \u00E2\u0080\u00A2 develop a community health plan; \u00E2\u0080\u00A2 form a CHCouncil; and \u00E2\u0080\u00A2 join with other communities to establish a RHB. As part of the guide, a question-and-answer section further clarified the process, and a list of resources was provided for further reference in helping groups with the five proposed steps. A \"closer to home\" approach for a community-based health system required \"more local management of health services...more service delivery in people's homes, local communities and regional areas\". One of the objectives of this approach was \"an integrated continuum of services\", e.g. community health centres. Emphasis was placed on health in a broad social and family context, with more attention on prevention and less on treatment and cure of disease than in the past. The Guide also expanded on the role and development of CHCouncils and RHBs. The pre-existing health unit boundaries of BC became the new regional boundaries for the RHBs. As the process developed, communities would be able to further refine these boundaries to meet their needs. RHBs and CHCouncils were to be accountable to the public and to the Minister of Health. Additionally, RHBs and CHCouncils were to be responsible for interministerial collaboration at their respective levels, and for maintaining essential (core) services5 that would be defined by the M O H . The M O H would be responsible for allocating funds to the RHBs, who would then be responsible for. allocating these to CHCouncils within the region. However, the M O H would retain responsibility for allocating funds for services that were provincial in scope, and for setting standards of care. The authority of the CHCouncils, RHBs and the Minister were to be defined by legislation, with the Minister ultimately accountable to the legislature for the health system in BC although the Minister may delegate decision making authority to the CHCouncils and RHBs. 1.3.4 Bill 45 - Health Authorities Act The Health Authorities Act (Bill 45) was passed July 27, 1993 with the consent of the Legislative Assembly of B.C. The Act set the first stage for the establishment of CHCouncils and 5 A report of the core essential services in BC was published by the BC Ministry of Health in 1994. -8-RHBs in B C . 6 Contents of the Act included: definitions; provincial standards; purposes, powers and procedures of the CHCouncils and RHBs; financial administration; liability of members, etc. By regulation, the Minister would designate the CHCouncils, the RHBs, and their respective areas. When differences over priorities should occur, the Minister's regulations would prevail over the RHB's regulations which would prevail over the CHCouncil's regulations. CHCouncil and RHB members would receive no remuneration, though they may be reimbursed for \"prescribed expenses necessarily incurred while discharging their duties as members\", e.g. transportation costs. 1.3.5 Processes. Benchmarks and Responsibilities for Developing CHCouncils and RHBs By the end of 1993, the M O H published Processes. Benchmarks and Responsibilities for Developing Community Health Councils and Regional Health Boards for use by local start-up groups, planning groups or steering committees in the development of CHCouncils and RHBs across BC. This publication was more detailed and extensive than the Guide for Developing Community Health Councils and Regional Health Boards that was previously published. Included in the Processes. Benchmarks, and Responsibilities document were: \u00E2\u0080\u00A2 guidelines on processes leading to the development of CHCouncils and RHBs; \u00E2\u0080\u00A2 a checklist of questions for each of the processes; \u00E2\u0080\u00A2 a list of key responsibilities of the M O H in support of each process; and \u00E2\u0080\u00A2 the identification of documents/reports required for each process. The processes leading to the development of CHCouncils and RHBs included the following: \u00E2\u0080\u00A2 community awareness and participation; \u00E2\u0080\u00A2 formation of community planning groups; 6It was later decided that some regions, in particular the urban areas, would only have an RHB and no CHCouncils (geographical size of a region played a factor in these decisions). One example was the Vancouver Region. -9-\u00E2\u0080\u00A2 development of community health plans; \u00E2\u0080\u00A2 application for designation as CHCouncils; \u00E2\u0080\u00A2 nomination of representatives for the Interim Regional Health Boards (IRHBs); \u00E2\u0080\u00A2 becoming part of an IRHB; \u00E2\u0080\u00A2 development of regional health plans; and \u00E2\u0080\u00A2 municipal elections for CHCouncils. The development of CHCouncils and RHBs were to be parallel processes; therefore, planning for them would occur simultaneously. Previously, the Guide for Developing Community Health Councils and Regional Health Boards had recommended that CHCouncils be formed before the RHBs. However, since CHCouncils were being developed at different rates, the deadline for the creation of RHBs may not have been met if they were to be developed only after the CHCouncils were established. As mentioned above, part of the process of developing CHCouncils and RHBs included the development of \"community health plans\" by community planning groups. The community health plans would set the stage for further development of more comprehensive community health plans. The following benchmarks were outlined for the community health plans: \u00E2\u0080\u00A2 proposed membership of the CHCouncil; \u00E2\u0080\u00A2 indications of support from local elected bodies; \u00E2\u0080\u00A2 priority health goals for the community; \u00E2\u0080\u00A2 priority issues for the region; \u00E2\u0080\u00A2 list of health service categories the CHCouncil proposes to deliver within the community and region; \u00E2\u0080\u00A2 process for developing a long-term evaluation plan; \u00E2\u0080\u00A2 identification of all current service providers and the process for dissolution of existing societies, e.g. hospitals or separate entities; -10-\u00E2\u0080\u00A2 clear description of community boundaries; \u00E2\u0080\u00A2 outline of the contents of a more comprehensive community health plan to be developed once the CHC is designated; \u00E2\u0080\u00A2 analysis of broad health issues within the community; \u00E2\u0080\u00A2 inventory of health services; \u00E2\u0080\u00A2 analysis of health indicators and utilization patterns within the community; \u00E2\u0080\u00A2 challenges and opportunities that New Directions provides for providers and consumers of service; and \u00E2\u0080\u00A2 indication of the \"progress-to-date\" in working towards a locally managed health system.. In regards to the development of the community health plan, the M O H would provide support and resources, including a framework for a comprehensive health plan to be developed after designation of the CHCouncils. 1.3.6 Minister's Health Forum The Minister's Health Forum, held February 28,1994 in Vancouver, was an \"important next step in a process that really began in November 1991\". Some of the forum topics included: a framework for implementing New Directions; timelines; dealing with communication between communities and the M O H ; and conflict of interest guidelines for CHCouncil/RHB members. The Minister, Paul Ramsay, re-emphasized the saving of costs and moving health services out of institutions into communities. New Directions was identified as an evolving blueprint for change rather than a final document. The Minister listed processes that were created to gather advice on how to build on the New Directions framework, including a governance working group to examine issues related to the development of the new health authorities, and a Deputy Minister's Advisory Committee to discuss all aspects of change. The possibility that CHCouncils in urban areas may be advisory to the respective RHB was mentioned at this forum.7 1.3.7 The Interim Regional Steerin2 Committee (IRSC) In August 1993 in the Vancouver Region, an Interim Regional Steering Committee (IRSC) was formed to represent citizens from across Vancouver. A selection committee of 6 neighbourhood leaders had chosen 15 volunteers for the IRSC, from 40 nominations submitted from over 150 non-profit organizations involved in health issues in the Region. Candidates had to have a background in community issues, knowledge of the broad determinants of health and the health system, or experience working on boards or coalitions. In a report to the Minister of Health in October 1994, the IRSC proposed for Vancouver a restructured health care system, recommending a structure for the delivery of health services, and a process for further regionalization. The recommendations were based on the work of the IRSC in gaining an understanding of the health care system, issues, challenges, and determinants of health, as heard from guest speakers, at presentations, at workshops and at forums held March to June 1994. A total of 8 recommendations were presented in the IRSC report, including: \u00E2\u0080\u00A2 the Health Authorities Act should be amended as it pertains to Vancouver; \u00E2\u0080\u00A2 a Regional Health Board for Vancouver should be designated immediately; Community Health Councils should be developed; \u00E2\u0080\u00A2 support for Neighbourhood Health Committees8 should be provided; \u00E2\u0080\u00A2 a reduction in the number of Hospital Boards (to one only) was strongly recommended; \u00E2\u0080\u00A2 an independent study to develop a plan for the governance and management of all hospitals within the Region was recommended; 7As will be discussed later in the chronology, the concept of CHCouncils being advisory to the Regional Health Boards was a contentious topic in the Vancouver Health Region. Neighbourhood Health Committees were to be one level below the CHCouncils. -12-\u00E2\u0080\u00A2 a study of the organization and provision of primary and secondary care within the Vancouver region should be conducted; and \u00E2\u0080\u00A2 a study of the organization of mental health services within the region was required. The IRSC recommended the development of 6 CHCouncils in Vancouver. . These recommendations (roles and responsibilities, number, boundaries, composition, terms of reference, and accountability) were based on the work of the IRSC with members of the 13 Community Planning Groups (CPGs). These 13 CPGs were organized from recognized neighbourhoods in Vancouver to address issues related to the administration and governance of community services. To do this the CPGs, along with the IRSC, held 2 workshops in May and June 1994. The result was a list of recommendations for the development of 6 CHCouncils. Vancouver was divided into 6 areas (see Appendix A for a map of the current Community Health Committee boundaries9), each with a corresponding CHCouncil whose roles and responsibilities were to include: \u00E2\u0080\u00A2 establishment of local health goals and objectives within the policies and regional health plan developed by the Regional Health Board; \u00E2\u0080\u00A2 promotion of community development programs, activities and initiatives, and support for innovative projects that promote health and prevent disease; \u00E2\u0080\u00A2 review and approval of new program/service proposals for the Council within the context of the local health goals and objectives; \u00E2\u0080\u00A2 ensuring that coordinated and integrated planning and evaluation of health care delivery occurs; \u00E2\u0080\u00A2 development and maintenance of a health education program, responsive to the needs of each Area; \u00E2\u0080\u00A2 provision for community input into regional decision making by appointing one member [from each CHCouncil] to the Regional Health Board 1 0; \u00E2\u0080\u00A2 work with local/community service providers on behalf of the Area constituents to ensure 9Minor changes in boundaries were made and the Richmond CHC was added in 1997. '\"Although Community Health Committees instead of Community Health Councils were created in Vancouver, one member from each of the Committees was still supposed to sit as a member on the Regional Health Board. However, this has not occurred. -13-that their needs are being met; \u00E2\u0080\u00A2 work with municipal departments and other ministries regarding local needs; promote citizen involvement by developing Neighbourhood Health Committees; and \u00E2\u0080\u00A2 develop an evaluation mechanism in conjunction with the Regional Health Board to assess the performance of the Council. The CHCouncils were to be responsible for 3 primary health services: Integrated Community Health Services; Continuing Care Communities; and local/community Health Care Agencies. However, it was recommended that the CHCouncils not be responsible for operating hospitals or other regional facilities. The IRSC also referred to \"Community of Interest Reference Groups\" (CIRGs). These groups were supposedly identified by the Royal Commission in 1991 as populations who have not been traditionally served well by the health care system. These 7 groups were: children and youth; frail elderly; Aboriginal peoples; people with mental illness;, multicultural health; persons with disabilities; and women.11 The CIRGs would support the planning and evaluation of health services within the Region by assisting the V H B and CHCouncils in: \u00E2\u0080\u00A2 planning and coordinating health care services for populations specified, including recommending the development of specific services or programs; \u00E2\u0080\u00A2 providing information on issues and concerns regarding health status; \u00E2\u0080\u00A2 acting as a \"cultural broker\" between the formal system and specific populations; and \u00E2\u0080\u00A2 assisting in the development of policies and plans for the Regional Health Board or Councils, where appropriate. In particular, CIRGs would be consulted for a review of any program, service, or policy under consideration by the V H B or CHCouncils that would affect the interests of the populations \"These groups constitute the Population Health Advisory Committees that currently now exist, in addition to a new PHAC in 1997. The current 8 PHACs are: Children and Youth; Seniors; Aboriginal; Mental Health; Multicultural; Disabilities; Women; and Gay, Lesbian, Bisexual, Transgender. -14-represented by the CIRGs. The CIRGs would include representation by service providers, consumers, and advocates. It was noted in the IRSC report that some CIRGs were already operating. 1-3.8 Designation of the Vancouver Health Board, Community Health Committees, and Population Health Advisory Committees The Vancouver Health Board was designated December 1994 (13 members), the 6 Community Health Committees (referred to as Councils in the IRSC report) were designated May 1995, and the 7 Population Health Advisory Committees (referred to as Community of Interest Reference Groups in the IRSC report) in September 199512. After designation of the CHCs, many of the Community Planning Groups, who had helped develop the structure of the CHCs, became Neighbourhood Health Groups (NHGs). NHGs were formerly referred to as Neighbourhood Health Committees. The CHCs and PHACs are composed of formally designated members. On the other hand, N H G membership is informal and open to all who are interested in participating. 1.3.9 Stated Roles and Responsibilities for the Community Health Committees and Population Health Advisory Committees The roles and responsibilities of the CHCs are stated in Bylaw N o . l , article 4.2, as passed in May 1995 and amended July 1995 by the Vancouver Health Board (VHB). The CHCs were considered to be committees of the V H B , with certain rights, purposes, and responsibilities (see Appendix B). Since the PHACs were not designated until September 1995, they were not mentioned in this Bylaw. The PHACs have instead Terms of Reference which define their stated roles and responsibilities and was approved by the V H B in 1996 (see Appendix C). During the planning and implementation of the development of the V H B and public 12There are currently 7 Community Health Committees and 8 Population Health Advisory Committees. See Section 1.3.10 for further explanation. -15-involvement committees (CHCs and PHACs), some changes occurred. First, names were changed; Community Health Councils became Community Health Committees, and Community of Interest Reference Groups became Population Health Advisory Committees. The name CHCouncils could not be used since there were no legal community boundaries in the Vancouver Region.1 3 Thus, the name Community Health Committee was used to reflect that they were committees of the V H B . Second, the statements of roles and responsibilities for the CHCs had changed (May to July 1995; just after CHC designation) from that of the CHCouncils as outlined in the IRSC report. In summary, the CHCs were to have less authority than originally conceptualized for CHCouncils in the IRSC report; the CHCs would not be responsible for a budget for their respective areas but would \"assist and advise\" the V H B in a variety of activities, including health planning, service integration, involving the community, and evaluation of health services and programs. The stated roles and responsibilities, Terms of Reference, of the PHACs were expanded from the list provided in the IRSC report. 1.3.10 What Have the Community Health Committees Been Doing Since Their Designation? Table 3 provides a brief time line of the activities in which the CHCs and PHACs have been involved since their designations. 'The term \"council\" has a specific legal definition, whereas the term \"committee\" does not. -16-Activity Jun. 3 -i Aug. Sep. o D Nov. Dec. Jan. 1996 a Mar. |Apr. May Jun. 3 -i Aug. Sep. tj 0 Nov. Dec. Jan. 1997 a u Mar. Apr. May Jun. 3 jAug. Sep. Oct. Nov. d CHC designation X CHC orientation X X X \u00E2\u0080\u0094 \u00E2\u0080\u0094 CHC discussion of committee operating procedures X X X \u00E2\u0080\u0094 \u00E2\u0080\u0094 first CHC Coordinating Committee meeting X CHC feedback on NHG Terms of Reference X X X X PHAC designation X PHAC discussion of committee operating procedures CHC representatives asked to sit on HGBs \u00E2\u0080\u0094-\u00E2\u0080\u0094 \u00E2\u0080\u0094 X X X X X X X ...... -\u00E2\u0080\u0094\u00E2\u0080\u00A2 \u00E2\u0080\u0094 \u00E2\u0080\u0094 \u00E2\u0080\u0094 \u00E2\u0080\u0094 ..... ---\u00E2\u0080\u0094 \u00E2\u0080\u0094 \u00E2\u0080\u0094-\u00E2\u0080\u0094 \u00E2\u0080\u0094 \u00E2\u0080\u0094 \u00E2\u0080\u0094 \u00E2\u0080\u0094 ...... CHC feedback on draft Management Plan \u00E2\u0080\u0094 \u00E2\u0080\u0094 X X X X X X X \u00E2\u0080\u0094 \u00E2\u0080\u0094 \u00E2\u0080\u0094 CHC feedback on CH Services Network X X X X \u00E2\u0080\u0094-\u00E2\u0080\u0094 \u00E2\u0080\u0094 CHC, PHAC is'sue identification and prioritizing t X X X X X \u00E2\u0080\u0094-\u00E2\u0080\u0094 \u00E2\u0080\u0094 CHC, PHAC evaluate health planning process X CHC feedback on Mental Health Study X X regional health goals workshop X Regionalization Assessment X X X X X X Women's PHAC disbanded . X CHC feedback on Health Plan Discussion Paper X X report on Women's PHAC X PHAC workshop re goals, strategies, etc. X PHAC work on goals, etc. for an issue X X X X CHC review Op. Framework for ICHSD X CHC discussion of community health centres X X X X X X X X X X X X X focus on core roles of gov. bet. CHCs and V/RHB X X X X X X X X X Inaugural Health Plan released X CHC, PHAC feedback on Inaugural Health Plan X X new Women's PHAC formed X new GBLT PHAC formed X CHCs and PHACs review proposals for Incentive Fund X X X X During the months of June, July, and August 1995, orientation sessions were organized for the CHCs, including topics such as: what determines health status; the \"Closer to Home\" vision of integrated services; the history of health care and health reform; what do CHCs do and how do they fit in; and governance and management. Following the June 28, 1995 orientation session, which outlined the responsibilities of the Vancouver Health Board and CHCs, some CHC members expressed concern as to \"how the CHCs will work together and how they will discharge their responsibilities\" (as expressed in a memo to all CHC members July 4, 1995 from 3 concerned CHC members). Consequently, a meeting was held on July 8, 1995 to discuss the following, as excerpted from the memo: \u00E2\u0080\u00A2 \"the mandate and the organizational chart which was presented at the orientation session\"; \u00E2\u0080\u00A2 \"the need to set up a CHC steering committee\"; \"exchanging information on how the 6 committees [CHCs] are progressing\"; and \"the CHC planning committee which reports to the Board\" [this was a committee of the Board which was involved in the development of the CHCs]. Various issues were brought up at the special meeting held July 8, 1995 (attended by 33 CHC members). First, \"for the past 2 years, we were led to believe that the grassroots would help to shape our health system starting with the neighbourhood groups\". Second was the discrepancy between the CHC members' interpretation of \"overseeing the delivery of certain community health services (public health, continuing care, and alcohol and drug services)\"14 and the organizational chart of the V H B which showed health-providing agencies reporting to the Board [instead of to the CHCs] -\"this has created confusion as to what role the CHCs are intended to play in the delivery of health care services and it needs to be clarified with the Board.\" As a result of this special meeting, a letter was sent to the chair of the V H B . Excerpts are taken from this letter: 14This quote is from the stated roles and responsibilities - the rights, purposes and responsibilities of the CHCs. -18-\"...It has come to the attention of the CHCs that our Rights, Roles and Responsibilities have dramatically changed from those recommended by the Royal Commission on Health, the Interim Steering Committee, and the Roles specified in the March 1995 Call for Nominations Package...The members of the CHCs, after extensive conversation by members, do not agree that our sole role is to 'assist and advise'...\" Another workshop was held August 5, 1995 \"for CHC members only\" (as stated in a memo to the CHCs from several concerned CHC members) to discuss the CHC relationship with the V H B and \"to explore ways to better improve our relationship with the Board and staff. Workshop attendees discussed their perceptions and interpretations of the issues and of the C H C s roles and responsibilities, with comments ranging from satisfaction to dissatisfaction. Attendees ranked communications and roles and responsibilities as their primary concerns. The issue of changed roles and responsibilities for CHCs was discussed at the CHC Coordinating Committee15 in late August 1995. As a result, the CHC Coordinating Committee requested a written response from the V H B as to why there was a change in the wording and as well as no consultation with the CHCs before any amendment. On November 9, 1995 the chair of the V H B wrote a letter to all CHC members. In this letter, the Chair stated that changes \"emerged from the evolving process of creating the governing structure for this region\", and briefly outlined the evolving process: \"...in the process of developing the by-iaws the lawyers advised that under the Act [Health Authorities Act] the Regional Board was the legal entity with the delegated authority and responsibility for the region under the Act. The Board could set up a system of Community Health Committees but we could not set up Community Health Councils as described in the Act...\" Whether or not CHC members were satisfied with this written response, there were no more organized efforts to deal with the issue of changed roles and responsibilities from those originally l5The CHC Coordinating Committee acts as a liaison between the CHCs and the Board. Both CHC and Board representatives sit on the CHC Coordinating Committee. There is also a PHAC Coordinating Committee, serving the same purpose for the PHACs. -19-stated for CHCouncils for Vancouver. Also during the year 1995, the CHCs developed operating procedures and policies for their respective committees, i.e. decision making, chairing, etc. In addition, the V H B asked the CHC for feedback regarding the draft Terms of Reference for NHGs, the V H B ' s draft Management Plan, and the draft Community Health Services Network. The Community Health Services Networks, which would operate in 6 geographic areas in the city, would integrate all health services and programs that support a local population, e.g. a health centre combining Public Health, Alcohol and Drug Services, Continuing Care, and primary medical care.16 The year 1996 started with health planning (identifying and prioritizing issues) until May 1996. The method for identifying and prioritizing health issues was left up to each individual CHC. However, the Region did provide the CHCs with a handbook to guide their activities, including questions (criteria) to help the CHCs rank the significance of the issues they identified.17 However, some CHCs did not use this tool at all, nor did they discuss the criteria in the booklet, although some CHCs did use parts of the booklet. At a workshop held June 13, 1996 for the CHC and PHAC members, the priority issues for all the committees were presented. Working groups were formed to comment on the regional process of issue identification, to identify similarities and differences in issues across and between CHCs and PHACs, and to develop draft policy directions based on the issues (guiding statements, such as strategies for dealing with the issues that were presented). At the end of June 1996 soon after this workshop, the Minister of Health, Joy McPhail 1 8 , \"This integration of services is similar to that of the CLSCs (Local Community Service Centres) in Quebec, and that of the Community Human Resources and Health Centres established in the 1970s by the NDP Government and later dismantled by the Socred Government. 'The researcher also feels that this handbook could have helped to standardize the identification and prioritizing of health issues. '\"Previously, a reference was made to the Minister as being Paul Ramsey. However, since Paul Ramsey, Andrew Petter (for a very short term) and Joy McPhail have been Ministers of Health. Penny Priddy is now the current Minister of Health as of February 1998. -20-requested a review of regionalization in B C ; this was known as the Regionalization Assessment. The policy Better Teamwork, Better Care (November 1996) was initiated in response to the report of the Regionalization Assessment Team. There were 2 major changes regarding the RHBs and CHCouncils. First, there was a reduction in the number of RHBs (from 20 to 11) and CHCouncils (from 82 to 34). Currently, either a RHB or a CHCouncil, but not both, exist in one geographic area or region (each RHB previously oversaw several CHCouncils). Several RHBs were amalgamated, including Vancouver with Richmond, forming the Vancouver/Richmond Health Board (V/RHB). This has led to the addition of 1 Community Health Committee to represent Richmond. As well, Richmond residents could sit on existing PHACs. The second major change related to the responsibilities of the CHCouncils. In those areas of BC without an RHB, 7 Community Health Service Societies (CHSSs) were created. The CHSS boundaries are co-terminus with the CHCouncils, i.e. there are several CHCouncils within each CHSS geographic boundary. While CHCouncils deliver Acute Care and/or Continuing Care Residential Services, CHSSs incorporate the services of Public Health, Adult Mental Health, Community Home Care Nursing, Community Rehabilitation, Case Management, and Health Services for Community Living. The Regionalization Assessment began in the summer, which was also a time when the CHCs were less active. However, during the Fall, the V/RHB asked the CHCs to provide feedback on the draft Health Plan Discussion Paper, which described an approach to health planning, and the draft Operating Framework for Integrated Community Health Service Delivery (a later stage of the original Community Health Services Network). CHCs were also asked to begin discussion on community health centres. In 1997, the issue of lack of clarity of roles and responsibilities again emerged. This time, a document brought forward from one of the CHCs to the CHC Coordinating Committee acted as the catalyst for questioning the specificity of the governance role of CHCs. The CHCs believed they -21-had various roles and functions in relation to the areas of outcomes, executive management, quality of service, finances/resource allocation, and internal governance. The V / R H B Executive requested their staff to prepare a document to reflect the region's view of governance. This document, sent to the CHC Coordinating Committee, included a matrix (see Figure 1) representing the core roles of governance for the V/RHB and CHCs. Figure 2: Draft matrix representing the core roles of governance for the Vancouver/Richmond Health Board and the Community Health Committees oversight Outcomes Local Management Quality of Service Resource Allocation CHC Governance VTTR V H B VTTR C H C CHC VTTR VHB VTTR C H C C H C VTTR V H B Y H B C H C C H C VTTR V H B VTTR C H C C H C 1 VTTR VTTR Y H B C H C CHC C H C The matrix specified who would have a role in each of policy formulation, final authority, and oversight (assessment, feedback) for the roles and functions identified by the CHC Coordinating Committee. This latter document and matrix were then discussed further at the March Regional -22-Connections meeting19 as well as at each individual CHC level. It was made clear by the V / R H B and its staff that this latter document was not meant to change bylaws, but rather to clarify them. The final draft was approved by the Board in September 1997 (CHC Governance Document; see Appendix D). Similarly in January 1998, the PHAC Coordinating Committee focused on the governance role of the PHACs. Also during 1997, the Inaugural Health Plan of the Vancouver/Richmond Health Board was published in the Spring. CHCs continued their discussions on community health centres. Starting in September 1997, CHCs became involved with the $5 Million Incentive Fund for innovations in community service delivery. The Incentive Fund, part of the budget of the V /RHB, was meant to encourage collaborative approaches to service delivery and meaningful involvement of the community in service planning. Proposals for funding from the Incentive Fund were invited for the following categories: mental health services; determinants of health; and health promotion and disease, disability and injury prevention. The CHCs held information sessions about the Fund, and helped to review proposals that were relevant to their respective CHC areas (PHACs also reviewed proposals relevant to their respective identified populations). 1.3.11 What Have the Population Health Advisory Committees Been Doing Since Their Designation? The PHACs attended orientation sessions (similar topics to the CHC orientation sessions) in the Fall of 1995. Also, during this time the PHACs developed their committee operating procedures. Like the CHCs, in the first half of 1996 the PHACs identified and prioritized issues for their 7 respective populations. Soon after the Summer of 1996, the Women's PHAC fell apart and was ''Regional Connections meetings were held once a month as an informal venue for discussions from V/RHB, CHC, PHAC and NHG members, and staff. They have been on hold since September 1997 when the Regional Connections meetings were evaluated. It had been suggested that it may not be necessary to meet as often as once a month. -23-disbanded. In a October 29, 1996 report prepared by one of the staff for the V H B , the common themes shared by the women who left the committee were: irreconcilable differences within the committee; dysfunctional group dynamics; and their loss of confidence in the existing committees' ability to function effectively and to fulfill its mandate. A new Women's committee was later formed in May 1997 based on recommendations from this report. In the Fall of 1996, towards the end of the Regionalization Assessment, a workshop was held for the PHACs regarding goals, strategies, etc. Each PHAC selected an issue and worked on developing goals and strategies for this issue. This work continued into 1997. In June 1997, the new Gay, Lesbian, Bisexual, and Transgender (GLBT) PHAC was formed. Like the CHCs, the PHACs also spent the Fall of 1997 involved in reviewing proposals for the $5 Incentive Fund. Finally, following in the footsteps of the CHCs the PHACs have started discussing their governance role as of January 1998. Public participation in the Vancouver/Richmond Health Region (in the form of CHCs and PHACs) is part of the health reform that's happening in BC. Although the CHCs and PHACs serve in a consultative capacity to the V/RHB and do have less authority than originally conceptualized, the chronology presents some of the activities in which the committees have been involved. The issue of authority and clarity of roles and responsibilities that have emerged with the CHCs and PHACs are not new concepts, as will be supported by a review of the literature. -24-LITERATURE REVIEW A review of the literature was conducted on policy processes, and on public participation on health-related boards and committees. The discussion of policy processes in this Thesis is based on the understanding that public participation in general occurs within a political context. Whether or not public participation is mandated by government, it is usually a process whereby affected parties have different vested interests. When mandated by government, public participation becomes a policy that may potentially be implemented. In particular, the discussion of public participation in the second part of the literature review focuses primarily on participation on health-related boards and committees, and provides a background for an analysis of the public participation experience in the Vancouver/Richmond Health Region. 2.1 POLICY DEVELOPMENT THEORY The views and theories presented in this section are mainly drawn from the work of Milio (1991), Lindblom (1959) (1980), Lee and Mills (1990), and Walt (1994), and relate to general policy development (i.e. not specifically health) and to health policy. Policies may be defined as \"formal statements that guide action, setting the range of possibilities for choices to be made\" (adapted from Milio 1991). Policy development can be envisaged through the phases and players in policy development, and how these players make decisions. A \"perfect policy implementation model\" has also been proposed (Hogwood and Gunn 1984). Finally, public participation and policy processes will be discussed together, and in the context of democracy and power. 2.1.1 The Phases and Players of Policy Development Policy development is not a linear process, but rather an essentially circular, iterative one. -25-Milio (1991) outlined the following policy development phases: initiation; adoption; implementation; evaluation, and reformulation. Rothman and Tropman (1987) similarly explained that policy processes include the \"generation of initial ideas, selecting some goals for further consideration, the management of the ratification process itself, and the link after ratification to more detailed planning and design, programming, and evaluation\". Furthermore, Rothman and Tropman (1987) confirmed that most writers on policy methods describe phases similar to these. Table 3 (adapted from Milio 1991) lists some generic questions implicit in policy-making associated with each policy development phase. This set of questions describes each of the 5 phases, and the decisions made within each phase. Table 3: Some generic questions implicit in policy-making (adapted from Milio 1991) Policy Phase Generic Questions Implicit in Policy-making Initiation Is the issue legitimate for policy? (If so, what is the definition and scope of the problem?) What priority should it have? What are possible solutions (goals, means)? What criteria should guide selection? Adoption Who decides and how (criteria used)? Implementation How and by whom should policy be implemented? Evaluation What are the criteria and sources of evaluation? Reformulation How should policy goals/means be changed? Although Table 3 includes all 5 phases in a sequential order starting with initiation, Rothman and Tropman (1987) observe that in practice, the policy processes ordinarily involve the development and improvement of written and formally approved guidelines for action, i.e. reformulation phase. Involved in the continuous process of making policy are various players including (Milio 1991): public policy-makers (political and bureaucratic); interested parties (groups in and outside government); the public (audiences, consumers, taxpayers, voters); and mass media (print and electronic). Some indicators for describing and analyzing these players and the scene of policy -26-making were also suggested by Milio, as shown in Table 4. Table 4: Suggested indicators to describe and analyze the scene and players in the policy-making process DESCRIPTIVE STORY (Chronology of phases under study; how players answered generic questions; their reasons and actions) ANALYSIS AND INTERPRETATION (Why is policy in its current form?) Players \u00E2\u0080\u00A2 overall agenda, goals, priorities \u00E2\u0080\u00A2 preferred and fallback position on the policy \u00E2\u0080\u00A2 initial involvement with policy \u00E2\u0080\u00A2 own interests at stake gained in policy and feasibility of own success \u00E2\u0080\u00A2 strategic actions taken (internal; information/media; interorganizational) \u00E2\u0080\u00A2 organization data on purpose, size, source of funds, age, constituencies, authority, influence (proximity to policy-makers) \u00E2\u0080\u00A2 Which players had influence? \u00E2\u0080\u00A2 What strategic actions failed and succeeded, and why (in relation to \"climate\" and competing interests gained or lost) ? \u00E2\u0080\u00A2 Did agendas, goals, priorities, policy views, structure, relationships, resources, or influence of players change during policy process? \u00E2\u0080\u00A2 Which population subgroups gained/lost? M a s s media extent of policy coverage, timing, prominence, emphasis, sources used, commentary Did media or public opinion change? The descriptive story tells how these players answer the generic questions presented in Table 4 and their actions and rationale for doing so. The analysis and interpretation of the descriptive story answer the question of why a policy is in its current form. Walt (1994) nicely summarizes the policy development phases and the scene and players in health policy in terms of \"process\" and \"power\" -\"it is concerned with who influences whom in the making of policy, and how that happens\". 2.1.2 How Are Policies and Decisions Made? Whereas Milio (1991) presents a descriptive framework for analyzing policy development, other writers discuss theories about how policies and decisions are made. Decision making for policy development has been classified into 3 major styles: rationalism; mixed scanning; and incrementalism. These styles are part of a continuum with rationalism and incrementalism being opposite extremes. -27-2.1.2.1 Rationalism and Incrementalism The rationalist style of decision-making is based on logic and a series of sequential steps as follows (Lee and Mills 1982): comprehensively review all select course of action that identify goals and objectives _ | possible alternatives and their ^ maximizes chosen goals and consequences objectives On the other hand, incrementalism is based on the assumption that values or objectives can not be classified, nor can alternative ways of realizing them be clearly identified or evaluated (Lee and Mills 1982). Only those policies that differ incrementally from existing ones are considered. A course of action is then chosen to account for various interests involved in the decision making process. 2.1.2.2 Strengths and Weakness of Rationalism and Incrementalism The rationalist approach, with its comprehensive review of alternatives and their consequences, leaves out nothing important (Lindblom 1959). There are clear goals and objectives against which to base evaluations, and decisions are coordinated. However, the rationalist approach is based on assumptions of intellectual capacities and sources of information humans do not possess. Moreover, a comprehensive review of all possible alternatives and consequences would require a substantial amount of time and money, which are limited. Some alternatives might even be foreclosed because of past commitments (Walt 1994). Rationalism requires first that values, objectives, and goals be clarified. Yet, people will disagree on values and objectives (which themselves may vary from circumstance to circumstance). \"Rationality\" is left to the judgement of the decision maker who him/herself has values (Walt 1994). In addition, while taking account of everything in sight as the rationalist approach requires, decision makers may see nothing in particular -28-[ just by trying to look at everything in particular. Incrementalism, on the other hand, assumes rationalism is not a priori possible, and purports to describe how things really are. Thus, drastic changes from the status quo are not ordinarily possible (Lee and Mills 1982). Only incremental differences are relevant, since policy does not move by leaps and bounds (Lindblom 1959). Though incrementalism may describe how things really work rather than an ideal, it is not comprehensive; it is concerned with increments rather than a comprehensive review of alternatives. Thus, the focus on gradual adjustments may discourage radical change, when that may be the required response. Moreover, incrementalism involves bargaining between the interests and values of various parties, and consequently the policy decision reached may reflect the dominance of those who shout the loudest. Finally, since goals and objectives may not be explicitly or clearly identified as in the rationalist approach, the evaluation of policies may be impeded. 2.1.2.3 Mixed Scanning Both rationalism and incrementalism represent extremes. The mixed scanning theory of decision making lies in the continuum between the 2 extremes, and therefore incorporates elements of both theories. The mixed scanning approach is based on the premise that rationalism is unattainable and that incrementalism is neither sufficiently systematic nor comprehensive. The first step of the mixed scanning approach is the use of a broad scan to identify which decisions might continue to be taken on an \"incremental\" basis and which require a more \"rational\" approach (Lee and Mills 1982). Instead of looking at all alternatives, certain alternatives are selected; this is termed \"bounded rationality\". Therefore, no major data or feasible course of action should be missed; however, selected \"relevant\" alternatives are considered in more detail. A strength of the mixed scanning method is that it is consciously selective; it provides a -29-method for being both practical and systematic. By first surveying the bigger picture rather than specifically on existing policies, the mixed scanning method facilitates the identification of major issues which require in-depth analysis and which may otherwise not be identified through analysis of existing policies (Lee and Mills 1982) (Walt 1994). Although considered to be a compromise between rationalism and incrementalism, the mixed scanning theory does not suggest the point at which the selection of alternatives ceases to be rational, the criteria by which alternatives should be selected, or by whom such decisions should be made. 2.1.3 The \"Perfect Policy Implementation\" Regardless of the style of decision making used, policies are usually developed with the intention that they will be implemented. Hogwood and Gunn (1984) list 10 necessary preconditions, \"perfect policy implementation\", before outlined objectives can be achieved: 1. The circumstances external to the agency do not impose crippling constraints. 2. Adequate time and sufficient resources are available. 3. The required combination of resources is available. 4. Policy is based on a valid theory of cause and effect. 5. The relationship between cause and effect is direct. 6. Dependency relationships are minimal. 7. There is an understanding of, and agreement on, objectives. 8. Tasks are fully specified in correct sequence. 9. Communication and coordination must be perfect. 10. Those in authority can demand and obtain perfect compliance. Although it is highly unlikely all 10 preconditions will exist in any specific situation, they can be used as a checklist against which to score the likelihood of success of policy implementation (Walt -30-1994). 2.1.4 Public Participation for Health and Policy Processes Implementation of policies rarely run smoothly. In a political analysis of community empowerment (which some associate with public participation), Labonte (1989) identified 5 cautions: romanticization; bureaucratization; anti-professionalism; decentralization; and self-help. Romanticization is the concept that the community can do no wrong. Bureaucratization is the \"taking over\" of community initiatives by health officials. Anti-professionalism is the denigration of community health workers instead of respecting their expertise. Decentralization is the transfer of decision making power to the local level, which however is unlikely to include substantial control over economic resources. Finally, Labonte (1989) explains that although self-help groups can be empowering and health-enhancing, it also taps primarily into volunteer energies. In a discussion of structural issues of policy making concerning health promotion implementation, Riitten (1995), like Labonte, also discusses bureaucratization. The other issues addressed by Riitten include: bounded rationality; play of power by those who have a vested interest in the status quo; organizational specialism; and policy networks. Organizational specialism, where labour is divided, leads to \"trained incapacity\" so that nobody may be competent should new tasks arise. Policy networks incorporate an interdependent structure of different settings, actors, and networking processes, which form a setting for cooperation and opinion formation (Walt 1994). 2.1.5 Participation in the Broader Context of Democracy and Power The political system of a country, state, etc. provides a framework within which people's participation in policy is either encouraged or discouraged (Walt 1994). The concept of community participation is closely linked to democracy and power (Arnstein 1969) (Kweit and Kweit 1981) -31-(Pritchard 1986) (Tatar 1996) (Thomson 1973) (Ugalde 1985) (Notkin and Notkin 1970) (O'Neill 1992) (Potapchuk 1991) (Burke 1968) (Dunaye 1970) (Roche 1981) (Brownlea 1987). The term democracy is usually associated with government by the people, directly or indirectly through representatives. The link between community participation and democracy is actually an old philosophical concept. Alexis de Tocqueville, in his book Democracy in America, discussed how impressed he was with participation in early America in the 1800s. In early America, when the towns were still relatively small (population of 2000 to 3000), town hall meetings were held and well-attended by the citizens of the town (direct government). The town folk were working together to establish a new society in a foreign land. Muller (1983) found in his study of community participation in Latin America that a common struggle promotes community organization. In contrast, today many towns and cities in developed countries are already established and much larger than the population of 2000 to 3000 present in the early 1800s in America. Thus, it would today seem more workable to have representatives of the people rather than direct participation (town hall meetings). Although de Tocqueville expressed that democracy was being achieved via representatives who were elected, others continue to debate whether this reflects true representation and participation. Once representatives are elected, they may no longer keep in contact with the people who elected them. Moreover, many who are eligible to vote do not do so, and it can not be said that by being passive, they are not in opposition to the representatives or those running for election. Although de Tocqueville felt that American citizens in the early 19 th century were relatively equal (no social classes) and that this contributed to the success of democracy and participation at that time, many societies do not exist without some sort of social stratification. Indeed, Ugalde (1995) concludes, based on a review of the literature on community participation, that the degree of success of any form of community participation is inversely correlated to the -32-degree of social stratification of the society. 2.1.6 Summary of Public Participation and Policy Development In summary, public participation can be considered a policy when mandated by government. Policy development is an iterative process, where policies can be reformulated at a later date. During the development of policies, various players enter the scene, each acting and making decisions based on their motivations. Policy development theory, as presented here, provides a context for understanding the complications and conflicts that arise with the development of policies, including those for health and public participation for health. 2.2 PUBLIC PARTICIPATION - ISSUES AND CONCEPTS In this section, a review of the issues and concepts in public participation are presented in relation particularly to participation on health-related boards/committees. Most research concerning public participation have focused on the implementation (structures and processes) of public participation. In the literature, the most salient issues and concepts are: the context within which public participation is promoted; a definition of public participation; the reasons for and against public participation; public interest in participating; creating boards/committees; representation of the public; roles and responsibilities of public participants; planning for and managing public participation; and evaluating public participation. 2.2.1 Putting \"Public Participation\" into Perspective What exactly does \"public participation\" mean? In the context of this thesis, \"public participation\" refers to the \"opportunities for local decision making by citizens\" via Regional Health Boards and Community Health Councils as mandated in New Directions for a Healthy British -33-Columbia February 1993. \"Citizens\" or \"public\", then, refers to the citizens of British Columbia who are neither part of the Government of British Columbia, nor health professionals or administrators paid through the British Columbia Ministry of Health (MOH). However, \"public participation\" is not limited to the realm of the health system (although it is for this Thesis), and may occur within the government or other organizations, groups, or agencies. In addition, there are different terms used almost synonymously or interchangeably with \"public participation\". For consistency, the term \"public participation\" is used most often in the Thesis (except when referring to other terms used by researchers in their discussions). Other terms related to public participation include: community participation; consumer participation; community involvement; lay participation; citizen participation; citizen involvement, and public involvement. These terms have often been used loosely without specifically defining the scope or extent of the participation, or the people who are supposed to be participating. Thus, \"public participation\" needs to be clarified. In reviewing the literature, 4 concepts contribute to the definition of public participation:,, \u00E2\u0080\u00A2 who is the \"public\" and who does this public represent? \u00E2\u0080\u00A2 what specific level of participation does this public have? \u00E2\u0080\u00A2 what specific purposes or responsibilities does the public participate in? and \u00E2\u0080\u00A2 how will this public be involved (mechanisms or techniques)? Several researchers have developed conceptual frameworks for clarifying public participation; however, these frameworks are not necessarily specific to participation in regards to health. These researchers include: Rifkin (1981); Rothman and Tropman (1987); Charles and DeMaio (1993); Arnstein (1969); Connor (1988); Potapchuk (1991); Rosener (1977); Wandersman (1981); and Frankish (currently ongoing). None of these frameworks completely encompass public participation (due to its complex nature), but they do explain different aspects of public participation. -34-2.2.1.1 Rifkin's (1981) Framework: 4 Approaches to Public Participation Rifkin identified 4 approaches to community involvement in health activities and programs: the public health approach; the health planning approach; the community development approach; and the self-care approach. Table 6 (adapted from Rifkin's article) summarizes these 4 approaches in terms of reason for public participation, roles of the health professional and layman, organization of public participation, and motivations and mobilization of the public. -35-Table 5: Comparison of 4 approaches to public participation (adapted from Riflrin 1981) Features Approach^. Reasons for Public Participation Role of the health professional Role of the layman Organization of Public Participation Mobilization/ motivation Public health To assist in the eradication, or at least control, of communicable diseases. Predominant (define, manage, and evaluate p u b l i c participation). Under careful instructions, follow orders of h e a l t h professional. Extension of existing health d e l i v e r y system. Fight disease -motivated and mobilized by the fact that their lives are in danger. Health planning T o c r e a t e additional health r e s o u r c e s ( m a n p o w e r , money, materials f r o m t h e community) and to gain support for b e t t e r utilization and development of health services. Team leaders -team defines p o l i c y and activities for h e a l t h improvements. Consultative capacity under leadership of the medical profession. Modification of existing d e l i v e r y system. Influence on r e s o u r c e allocation. Community development To correct the imbalance in health resource distribution and to have people participate in decisions and activities which affect their daily lives. Resource, not source, of health care since health care is the domain and responsibility of the layman, not the professional. Major role in p l a n n i n g , managing, and e v a l u a t i n g activities. Restructuring of delivery system. Power to the p e o p l e (especially the p o o r a n d underpriveleged) with growing realization of b o t h t h e problems and of the possibility of solving these p r o b l e m s themselves. Self-care To meet the health needs of individuals which the professionals are either unable or unwilling to meet. Peripheral. Self-care organization of a group(s) to contribute to the needs of the patient. Structure from within group. Need for support for common problems - inner needs of the individual. Each approach addresses a different reason for involvement of the public in health activities and programs. Thus, the expected roles of the health professional and the public, under each approach, also differ. Rifkin outlines how her analysis of the role of the public in health activities and programs help to define the nature of public participation. The analysis shows there is no singular, -36-homogenous view about the role of the public, thus highlighting areas of potential conflict among those who identify with specific views. 2.2.1.2 Rothman and Tropman's (1987) Framework: 3 Approaches to Community Organization Rothman and Tropman identified 3 important approaches to purposive community change (not specific to health): locality development; social planning; and social action. Locality i development presupposes the optimal pursuit of community change through broad participation at the local community level in determining goals and action. In the social planning approach, a technical process of problem solving substantive social problems is emphasized (rational, deliberately planned, and controlled change). The social action approach presupposes a \"disadvantaged segment of the population that needs to be organized...in order to make adequate demands on the larger community for increased resources or treatment more in accordance with social justice or democracy\". These 3 approaches are not meant to be exhaustive nor are they necessarily discrete. Like Rifkin (1981), Rothman and Tropman delineates various approaches (Rifkin for participation in health activities and programs and Rothman and Tropman for community change, but the 2 are often related) which clarify existing perspectives and assumptions to participation. These differing perspectives determine the form a public participation exercise will take. 2.2.1.3 Charles and DeMaio's (1993) Framework: Key Dimensions of Lay Participation While Rifkin (1981) and Rothman and Tropman (1987) discuss different approaches to the organization of public participation, Charles and DeMaio present 3 key dimensions of lay participation in health care decision making: decision making; role perspective; and level of participation (see Figure 3). -37-Figure 3: The 3 key dimensions of Charles and DeMaio's (1993) framework of lay participation DECISION MAKING DOMAIN Macro Service Treatment LEVEL OF PARTICIPATION Dominant Parlnenhlp Consultation The Definition of \"Lay \" Instead of dwelling on the limitations of any one definition, Charles and DeMaio note a common theme among various definitions of \"lay\" in the literature - \"lay individuals are somehow distinguishable from traditional health care decision makers, whether providers, government officials, or managers at the service delivery level\". These traditional health care decision makers have one or more of the following characteristics: a financial vested interest in health care decision making outcomes; professional expertise in an abstract body of knowledge that can be applied in the health care field or are, in general, providers (vs. non-providers); or a part of health care decision making structures. The 3 Key Dimensions of Lay Participation The decision making dimension includes decisions made at the treatment level through service delivery (more broad) to the macro- or system-level (even more broad). The treatment level refers to decisions on treatment or services to be provided to patients. Service delivery refers to resource allocation decisions for a defined service region, e.g. district health council. Macro- or -38-system-level refers to allocative and policy decisions for a broader jurisdiction, i.e. provincial or Y national. These 3 subdimensions are not entirely discrete. Clearly, decisions in one subdpmain may be made within the context of another. Two role perspectives of lay participation are distinguished: that of a user of health services and that of a public policy perspective. A user perspective refers to a concern about the impact of a decision on an individual's narrowly defined interests. A public policy perspective refers to a concern with a broader public or community good. These 2 role perspectives are not mutually exclusive. It is possible to bring both perspectives into decision making. For the level of participation dimension, Charles and DeMaio use a condensed version of Feingold's (1977) ladder of participation (to keep the framework manageable). The condensed version includes the levels consultation, partnership, and dominant citizen control. Feingold's ladder, in turn, was an adaptation from Arnstein's (1969) earlier ladder of participation. Arnstein's ladder included the following levels, from the least to the most \"participation\": manipulation; therapy; informing; consultation; placation; partnership; delegated power; and citizen control. Table 7 summarizes Arnstein's ladder. This illustrates the range from no input into decision making (to the point of manipulation), to complete citizen control. In real life, the distinctions are not as sharp. Different levels of participation may occur at different stages of incorporating public participation into health care decision making (level of participation may increase or decrease). -39-Table 6: Description of Arnstein's Ladder of Participation (adapted, from Arnstein 1969) Level of Participation Extent of Participation Description Manipulation Non-participation People are placed on advisory committees/boards for the purpose of \"educating\" them or engineering their support. Often used as a public relations vehicle by powerholders. Therapy Non-participation Citizens are engaged in extensive activity, but the focus is on curing them of their \"pathology\" rather than change what creates their \"pathologies\". Informing Degrees of One way flow of information from officials to citizens with no channel tokenism provided for feedback and no power for negotiation. However, informing citizens of their rights, responsibilities, and options can be an important first stefT-toward legitimate citizenjparticipation (. onsultation Degrees ol Inviting uli/eiis opinions with no a.ssuiance that citi/en concerns and tokenism ideas will he taken into amount Plaeation Degrees of \Mowing citizens to advice or plan ad inlinitum. hut retain for tokenism powerholders the right to judge the legitimacy or feasibility of the aJv ice. An example would be a hoard w hich includes citizens, hut the majoritv of seats are held'by the traditional power elite. Partnership Degrees of citizen Power is redisliihuied lluough negotiation between citizens and power pow ei holders 1 hcv shaie planning and decision making responsibilities Delegated power Degrees of cili/en Citizens have dominant decision making aulliontv An example would be power citizens having the mnioritv ol\"seats on a board. Citi/en control Degrees ofciti/en pow ei (.'iti/ens can govern a program man institution, be in full charge of poliov and managerial aspects, and be able lo negotiate the conditions under which \"outsiders\" mav change them. Comments on Charles and DeMaio 's Conceptual Framework Models and frameworks have strengths as well as weaknesses. Some of the strengths of Charles and DeMaio's framework include the following. It is comprehensive in that it addresses various dimensions of lay participation - decision making, role perspective, and level of participation - whereas others focus on the level of participation only. It also provides a visual means (the cells of the cube in Figure 2) of conceptualizing and analyzing a range of options available for lay participation. In addition, the authors suggest the framework can be used to illustrate the restricted low level participation present in many examples of lay participation. On the other hand, various weaknesses are also apparent in the framework. First of all, a static picture is presented, whereas lay participation may involve different dimensions at different stages of a participation process. Moreover, the framework does not describe the various methods by which lay input can be included -40-in decision making, within any dimension of participation. Finally, the interactions of stakeholders and the context within which they interact are not part of the framework. In summary the framework can be used to describe the type of decisions and the level of involvement of lay participation in health care decision making within government or organizations, groups, or agencies. However, the framework is lacking in describing the processes of including lay input in health care decision making and the interactions of the players and the setting in which participation is intended to occur. 2.2.1.4 Connor's (1988) Framework: A \"New\" Ladder of Citizen Participation Connor's \"new\" ladder of citizen participation is meant to \"provide a systematic approach to preventing and resolving public controversy about specific policies, programs, and projects whether in urban, suburban, or rural settings and whether governmental or private sector in sponsorship\", and is not limited to participation for health. The \"new\" ladder addresses Connor's observation that Arnstein's ladder was limited to urban, black ghettos, and did not suggest a logical progression from one level to another. Figure 4 is Connor's \"new\" ladder of citizen participation, while Table 7 presents a description of the rungs on the ladder. -41-Figure 4: Connor's (1988) \"new\" ladder of participation Table 7: Description of rungs on Connor's (1988) \"new\" ladder of citizen participation Rung Description Education Provide people (informed public) with a sound knowledge base (objectives, activities, effects and plans). Information feedback Information about a proposed change is disseminated, and at the same time, people's views on the proposal and its alternatives are solicited. Consultation An advisory process (public views may be accepted or rejected) that solicits the following: additional solutions; additional potential evaluation' criteria; views of interested and informed people on the evaluation criteria; and technically sound and economically acceptable alternative solutions. Joint planning Representatives of each agency, etc., meet in a planning workshop and work through a shared definition of the situation, the alternative solutions, and an evaluative procedure. Mediation A neutral third party leads the others through a conflict-resolving process often resulting in compromise solutions. Litigation Legal action and court decisions. Resolution/prevention Resolution/prevention of a controversy about a proposed policy, program, or project. In Connor's framework, resolution/prevention of public controversy is the highest rung on the ladder. Theoretically, success at any of the rungs of the ladder can lead to resolution/prevention. However, -42-i f one step does not lead to resolution/prevention, then the next rung up can be applied. Connor also states that \"there is a cumulative relationship between the rungs on the ladder - each successive rung builds upon the previous one\" and that \"at times, several approaches will be used simultaneously in order to meet the needs of the parties involved\". In summary, Connor's \"new\" ladder presents an approach to preventing and resolving public controversy. Although not stated directly, upon reading Connor's discussion, one gets the impression that he views public controversy as a negative event that needs to be prevented or resolved. Burke (1968) also discusses the perception of involving citizens to prevent anticipated obstruction. Unlike some researchers who feel the public has a right to participate and can be a valuable resource, Connor only lists one reason that values the public as a resource: \"Some of the advantages of preventing public controversy about a proposal are: savings in time and cost for implementation; [italicized by the author for emphasis] technically better proposals as a result of public consultation, regardless of the format used; avoidance of a negative image by the organization; and improvement in morale among the organization's staff and related agencies.\" Regardless of what Connor's views on participation may be, his ladder does outline ways in which participation can occur. 2.2.1.5 Potapchuk's (1991) Framework: Building Consent Potapchuk observes that neither Arnstein's (1969) nor Connor's (1988) ladder \"effectively captures the need for support from the broader community, community elites, and local government leaders necessary for major community initiatives\". Rather than viewing the purpose of citizen participation as identifying opposition, Potapchuk felt it should be viewed as building consent, using collaborative processes of shared decision making (see Table 8). -43-Table 8: Potapchuk's (1991) linking of citizen participation techniques to the levels of shared decision making Levels of shared decision making Elite processes Community-wide processes Elite/community processes Government decides n/a n/a n/a Government consults with individuals and decides Lobbying. Private consultations. Public hearings. Polls and surveys. Hotlines. Written comments. Interactive cable TV. n/a Government consults with a representative group and decides Government works with a representative group and they jointly decide Blue ribbon panels. Charettes. Mediation. Negotiation. Neighbourhood meetings. Citizen advisory groups. Focus groups. Large scale collaborative planning. Community-based working groups. Regulatory negotiations. Parallel and coordinated processes. Government delegates decision to others Privatization of public decision making. Neighbourhood councils. Community development cooperations. n/a There are 5 levels of shared decision making: government decides; government consults with individuals and decides; government consults with a representative group and decides; government works with a representative group and they jointly decide; and government delegates decision to others. Potapchuk also emphasizes the importance of defining expectations especially regarding the question of who decides and inviting citizens into the earliest stages of the process (and keeping them involved throughout). What Rifkin's (1981) and Charles and DeMaio's (1993) frameworks lack in techniques for citizen participation, Potapchuk's framework contributes by linking several techniques with the levels of shared decision making and the audience they serve. 2.2.1.6 Rosener's (1977) Technique/Function Matrix: Tying Strategy to Function Rosener developed a technique/function matrix (Table 9) to \"help frame participation choices so that techniques [for participation, not necessarily limited to health] will be chosen in terms of the functions they perform and their potential effectiveness\". -44-Table 9: Rosener's (1977) Technique/Function Matrix Function Technique/Function Matrix Technique \u00E2\u0080\u00A2a S Arbitration and Mediation Planning X X X X Charrette X X X X X X X X X X Citizens' Advisory Committee X X X X X X X X X X Citizen Employment X X X X X X X X X Citizen Honoraria X X X X X X Citizen Referendum X X X X X Citizen Representatives on Policy-Making Bodies X X X X X X Citizen Review Board X X X Citizen Surveys X X Citizen Training X X X X Community Technical Assistance X X X X X Computer-based Techniques (depends on specific technique chosen) Coordinator or Coordinator-Catalyst X X X X X X X Design-In X X X X X X X X Drop-In Centers X X X X X X X Fishbowl Planning X X X X X X X X X Focused Croup Interview X X X X X Game Simulations X X X X Group Dynamics X X X Hotline X X X Interactive Cable TV X X X X X X X Media-based Issue Balloting X X X X X Meetings\u00E2\u0080\u0094Community-Sponsored X X X X X X X X X Meetings\u00E2\u0080\u0094Neighborhood X X X X X X X X X Meetings\u00E2\u0080\u0094Open Informational X X X X X Neighborhood Planning Council X X X X X Ombudsman X X X X X X Open Door Policy X X X X X X X Planning Balance Sheet X X Policy Capturing X X Policy Delphi X X Priority-Setting Committee X X X X Public Hearing X X X X X X Public Information Programs X X X X Random-Selected Participation Groups X X X X X X Short Conference X X X X X X X X X X Task Forces X X X X X Value Analysis X X X X Workshops X X X X X X X X X X -45-Although the list of techniques and functions for participation is extensive, Rosener also recognizes that it is not exhaustive. The value of this matrix lies in the fact that it forces those choosing participation strategies to view participation in terms of functions rather than numbers. Numbers (e.g. how many people participate) reflect quantity, not the quality of participation. 2.2.1.7 Wandersman's (1981) Framework: Clarifying Participation and How It Works Wandersman's framework of participation in community organizations (not specific to health) addresses the following dimensions: who is participating; how people are participating; what are the effects of participation; and the nature of relationships among the dimensions. The 6 major elements of Wandersman's framework are: environmental, biological, and social characteristics of the community; individual differences; parameters of participation; mediators; moderators; and the effects of participation (see Figure 5). Figure 5: Wandersman's (1981) framework of participation in community organizations Environment*). Ecological, and Social Characteristics Ot I ha Community Moderators Figure 1. A Framework of Participation In Community Organizations -46-The effects of participation - whether individual, organizational, or community - are affected by the first 4 elements. Antecedents to participation (before participation) incorporate the first 2 elements (characteristics of the community and individual differences) and contribute to whether an individual participates or not. The parameters of participation define the size, scope, and function of the organization, the type of participation, and techniques of participation. Mediators act between participation and its effects - \"why does participation have the effects it has?\" Examples of mediators might be participants' efforts or feeling of competence. Moderators are \"variables which affect the relationship between 2 other variables\", e.g. individual differences. The framework provides perspectives on the relationships of various characteristics of participation and the effects of participation. 2.2.1.8 Frankish's (currently ongoing) Framework: Measures of Community Participation in Health System Decision Making An extension of Wandersman's framework is currently being developed by Frankish (all information in this section is via personal correspondence). The objective of Frankish's study is to \"develop and test measures of community participation in health system decision making and community health promotion\". This study is currently being conducted with the health authorities in BC under regionalization (Regional Health Boards, Community Health Councils, and Community Health Services Societies). Frankish's study, when completed, will further contribute to Wandersman's framework - measures of community participation and what works to achieve it. 2.2.1.9 Decentralization/Regionalization and Public Participation Decentralization/regionalization, though not commonly identified by researchers as an approach or framework for public participation, has been used as a strategy for health reform across Canada, where public participation has been included as part of this strategy. The general definition -47-of decentralization is the dispersal of power in public planning, management, and decision making from higher to lower levels of government (Mills et al. 1990). Four main types of decentralization can be distinguished: deconcentration; devolution; delegation; and privatization (Minister of National Health and Welfare 1993). See Table 10 for definitions of these 4 types of decentralization. Table 10: The 4 t ypes of decen tralization (from Minister of National Health and Welfare 1993) Type of decentralization Type of Authority Transferred Authority Transferred From To Comments Deconcentration administrative (personnel, budgets) c e n t r a l government local level Deconcentration can either be vertical or horizontal. Delegation of responsibility across a number of programs is called horizontal deconcentration. Devolution political c e n t r a l government local level of government or local board responsible for managing and delivery health services These local levels of government and local boards, though rarely autonomous, are largely independent of the central government with respect to their area of responsibility (ed. Mills et al. 1990) Delegation managerial for defined functions c e n t r a l government organizations that are outside the central government structure, yet not c o m p l e t e l y autonomous, i.e. directly controlled by the central government Privatization s e r v i c e delivery c e n t r a l government third party, i.e. v o l u n t a r y organizations and private profit-making or non-profit enterprises (ed. Milio et al. 1990) However, a variable degree of government regulation may still be maintained. Related to decentralization is the concept of regionalization. Regionalization commonly refers to the adaptation of the central government's policies, plans, and programs to consider the special characteristics of a region (Minister of National Health and Welfare 1993). Though regionalization -48-is conceptually distinguishable from decentralization, regionalization in practice incorporates some form of decentralized authority. How does public participation fit into decentralization? Decentralization is often seen as a means for public participation in making decisions on local health services (Glogow 1973) (Howard 1972). However, on its own decentralization is probably inadequate to promote public participation (Mills et al. 1990), i.e. decentralization is not synonymous with public participation and can occur without public participation. Therefore, mechanisms are required locally if communities are to have an impact on health service decision making. Although the description of a decentralization strategy may specify who is involved in decision making and at what level, it is not conceptually useful for describing mechanisms to promote public participation. 2.2.1.10 Final Comments on Putting Public Participation into Perspective Public participation is not easily described. There are different but no accepted definition of public participation or any of its related terms. For example, who is the public, or consumer, or community? What is participation, or involvement? In addition, public participation does not necessarily occur within the realm of health per se, nor in the health system. It is highly recommended that public participation (or whatever term is being used) and the context within which it occurs be clarified (Kweit and Kweit 1981), whether or not this participation be in health. Though frameworks are not usually all-encompassing, each does make its own contribution. Rifkin (1981) and Rothman and Tropman (1987) describe various approaches to participation and community organization and the underlying assumptions of the approaches. Charles and DeMaio (1993) discuss key dimensions of lay participation in health care decision making - decision making, role perspective, and level of participation - which help to make more explicit the role of the layman in participation processes. Connor (1988) provides an approach to preventing and resolving public -49-controversy, while Potapchuk (1991) discusses various techniques for involving citizens at different levels of shared decision making. Rosener (1987) discusses different techniques for participation in relation to various functions of participation. Finally, Wandersman (1981) and Frankish present a framework for what works to achieve community participation and its effects. 2.2.2 Reasons for and Against Public Participation in Health Decision Making Various reasons have been used to promote the concept of public participation (see Table 11; the reasons listed are not necessarily empirically supported, nor are they necessarily advocated by the authors listed). The more common reasons relate to the theme of matching the health services offered with people's perceived or real health needs and that participation is a right people have. It is assumed people know what's best for themselves, and should be empowered to make informed decisions regarding their personal treatment as well as health services for their communities. Although public participation has been promoted by government and researchers, the expectations that accompany citizen participation in general are often too high to be realized, i.e. citizen participation is often seen as a panacea for the ills of society (Kweit and Kweit 1981). In addition, Madan (1987) notes that the opinions of lay persons may not be superior to professional judgements, since it can not be assumed that lay persons necessarily make better decisions than do professionals. This relates to the concept of romanticism discussed by Labonte (1989). -50-Table 11: Reasons for having citizen involvement (the reasons listed are not necessarily empirically supported, nor are they necessarily advocated by the authors listed) Reason for having citizen involvement References Increased responsiveness and accountability to reflect the goals, aspirations, and needs of users of services so health needs and services are more closely matched. Metsch and Veney (1976), Bracht and Tsouros (1990), Charles and DeMaio (1993), New Directions for a Healthy British Columbia (1993), Feingold (1974), Silver (1973) People have the right and therefore should have the opportunity to participate individually and/or collectively in the planning, implementation, and evaluation of their health and environment (from Alma-Ata). Bracht and Tsouros (1990), Madan (1987), Planning for Health: Toward Informed Decision-Making (1993), Burke (1968), Feingold (1974), Schmidt and Rifkin (1996), Sawyer (1995), Sepehri and Pettigrew (1996) Appreciation of untapped community resources and energy that can be mobilized. Bracht and Tsouros (1990), Sepehri and Pettigrew (1996) As a means to foster community empowerment, so community will have a sense of contribution, feeling of some power or place in the system. O'Neill (1992), Brownlea (1987), Bracht and Tsouros (1990), Planning for Health: Toward Informed Decision-Making (1993) Loss of faith in the legitimacy and superiority of professional knowledge in health care decision-making. Charles and DeMaio (1993), Silver (1973) Patient preferences should be incorporated into decision-making that involves individual treatment choices. Charles and DeMaio (1993) Broader range of inputs to a decision, or providing comprehensive solutions to a public health problem. Brownlea (1987), Madan (1987), Bracht and Tsouros (1990) Cost-effective Madan (1987), Creighton (1992), Sepehri and Pettigrew (1996) Pretest feasibility and acceptability of new programs or ideas. Bracht and Tsouros (1990), Metsch and Veney (1974), Silver (1973) More efficient delivery of services. Planning for Health: Toward Informed Decision-Making (1993), Galiher et al. (1971), Brownlea (1987) Gaining wide citizen support and the efforts of volunteers. Bracht and Tsouros (1990) Citizen participation in planning and carrying out health programs yield acute awareness of health problems, increase use of health services20, and prevention of diseases. People are encouraged to take an active role in maintaining or restoring their health. Glogow (1973), Pritchard (1986) Table 12 (again, the reasons listed are not necessarily empirically supported, nor are they necessarily advocated by the authors) lists reasons against public participation. Many people remain concerned that lay people do not have the skill, knowledge, and/or objectivity in decision making and would thus waste resources and time. 2 0 An increase in use of health services may be intended for those citizens whose health may be improved through the use of health services but who are not using these health services, e.g. vaccinations. -51-Table 12: Reasons not to have citizen involvement (the reasons listed are not necessarily empirically supported, nor are they necessarily advocated by the authors) Reason against having citizen involvement References Health care professionals feel they are the legitimate providers of care. Planning for Health: Toward Informed Decision-Making (1993) Efforts to protect individual rights may compromise quality of care. Planning for Health: Toward Informed Decision-Making (1993) Participation involves people who have less skill or knowledge than those responsible for making the decision. Planning for Health: Toward Informed Decision-Making (1993), Brownlea (1987), Fauri (1973) More costly and less efficient. Arnstein (1969), Fauri (1973), Piette (1990), Bracht and Tsouros (1990), Kweit and Kweit (1981) Participation involves people who are less accountable for whatever the outcome might be. Brownlea (1987) Participation involves people who have a more self-interested level of involvement or concern than perhaps might be expected of the ultimate decision-makers. Brownlea (1987), Metsch and Veney (1976) The diversity in the reasons for and against public participation reflect its complexity. Even for those who agree public participation is good (or bad), their reasons for it are far from homogenous. Thus, it is important that the reasons for public participation be explicitly stated, with these explicit statements serving as a basis for its implementation. 2.2.3 Issues in Public Participation Not all examples of public participation are the same; a variety of factors affect the participation process. The literature abounds with studies on public participation (some of these analyses are presented in this section). However, since these studies are often not experimental in nature, the findings are not empirical and generalizations may not be possible. This Thesis focuses on public participation that is mandated (via a board and its public advisory committees) within a health system based primarily on government control. Consequently, this section focuses mainly on issues of public participation related to boards/committees within the health system. Although the main focus is on such boards/committees, studies related to public participation in general are also presented. -52-2.2.3.1 Public Interest in Participating Public interest in participation can be examined in terms of mobilization to join a board/committee, and remaining on a board/committee as a member. Examples from the literature show that neither is easily achieved. 2.2.3.1.1 Mobilizing the Public The difficulty in mobilizing the public to participate - whether this participation be on boards/committees, or in elections or voting, etc. - has been recognized by researchers (Howard 1972) (Bracht 1991) (Brieland 1971) (Morone and Marmor 1981) (Louw et al. 1995). Brownlea (1987) observed that mobilizing the public may be even more difficult in communities with high levels of the unemployed, benefit recipients, and of the aged, disabled or ethnic groups. Low income consumers may not participate in activities with little or no compensation (Parker 1970). Who is mobilized to participate? Participation is more likely among those who are already motivated and have a high interest in the community (Brieland 1971) or are concerned about their community, have more experience in community leadership, and feel that competent colleagues could be enlisted to support projects (Bracht and Tsouros 1990). Why are the rest of the public not mobilized to participate? Some people may not even be interested in participating (Brownlea 1987), while others participate in what interests them (Lomas and Veenstra 1995). Not all groups will be motivated to participate in all health programs (Woelk 1992) (O'Neill 1992). In addition, health concerns, though important, are intermittent for most people (Morone and Marmor 1981). With Quebec's experience in community participation, O'Neill (1992) notes that the population in general was not interested in participating because its delegates were confronted by highly technical and complex issues and by a \"technoprofessional\" culture to which they did not belong. -53-Since the reasons for not participating will most likely vary depending on the population and where participation is intended to occur, no standard strategies exist for mobilizing the public to participate. However, a logical suggestion might be made that attempts to understand the reasons why the public do not participate should precede the development of any strategy for mobilizing the public. In addition, i f the public is to be involved, information should be presented/disseminated to the public. This information can include the objectives of the participation exercise and the tasks being given to the public, which can be used to encourage the public as well as elicit informed input (Abelson and Lomas 1996). 2.2.3.1.2 Remaining on a Board/Committee Several researchers have recognized the phenomenon of waning interest and commitment of public participants in general (Madan 1987) and on boards/committees (Brieland 1971) (Morone and Marmor 1981). For example, in Panama from 1969 to 1974, over 400 health committees had been organized to set priorities and discuss the resolution of health problems (Ugalde 1985). However, the community soon lost their enthusiasm for participation when it was realized that decision makers were unwilling and/or unable to satisfy their health demands. Bracht and Tsouros (1990) suggest the importance of offering specific rewards or benefits to those involved. Other possible reasons for waning interest or commitment on boards/committees, based on the author's experience are: the individual's goals do not correspond with those of the group; the board/committee is neither organized nor goal-oriented; the activities or goals of the board/committee has changed since an individual first joined; other activities of the individual are relatively more beneficial within the individual's time constraints; the work of the individual is neither recognized nor appreciated; and slowness in attaining goals. -54-2.2.3.2 Creating Boards/Committees 2.2.3.2.1 Method of Selection There are various ways, along a continuum, to select public participants for a board/committee, from completely selected by the \"public\" to completely selected by the \"non-public\" (e.g. appointments made by the government). A mixture of both is also possible. Strategies for selection by the public includes elections and community appointments. Several concerns arise with the use of elections for selecting public participants for boards/committees. The number voting may well be under that of participation in an ordinary election (Brieland 1971). With such a small number of votes, a takeover by specialized groups or organizations is more likely (Brieland 1971) (Morone and Marmor 1981). Despite low voting numbers for elections, Brieland (1971) also notes that elections are generally preferable i f a maximum publicity effort is made. Public participants can also be selected to boards/committees by appointments made by community members, as was the case for the first members on the Vancouver Health Board (1994) and the Community Health Committees (1995). Notkin and Notkin (1970) observe that a community-selected board of directors (for health services) suits community desires. However, in parallel to the concerns about elections, community appointments may show bias towards the selection of people from specialized groups, especially i f the community members making the appointments may themselves be from a specialized group. Moreover, the use of community members to appoint public participants to boards/committees reduces the pool from which public participants can be drawn. Those making the appointments would otherwise be eligible for the board/committee (if they so choose) i f they weren't involved in the selection process as this may create a conflict of interest. On the other hand, appointments by community members may be recommended on the assumption that they, as community members, would know better than the non--55-public who the suitable candidates for boards/committees would be. 2.2.3.2.2 Selection Criteria Selection criteria, which can vary from fairly regulated to fairly loose, deal with characteristics of individuals of the public who want to be members of a board/committee. Selection criteria are important in that the individuals selected will bring their characteristics and backgrounds into their interactions and decision. Such characteristics may include (not exhaustive): degree of experience on boards/committees; background knowledge of health or specific health issues; time commitments; belonging to a group or community; personality, ability to work in a team, credibility and reliability (Brownlea 1987); political values; economic values; and skills. Metsch and Veney (1976) suggest that public participants who have had previous participatory experiences could participate more effectively. Other public participants may have had little organizational experience (Cathcart 1970), and for persons unaccustomed to holding formal institutional power, the sudden assumption of such responsibility may be a disorienting and disconcerting experience (Parker 1970). 2.2.3.3 Representation of the Public - Myth or Reality? Health-related boards/committees with public participation can serve either special interests or the public good. With special interest boards/committees, there is some but little debate as to whether or not the members represent the special interest though Morone and Marmor (1981) note that individual members of a group (special interest) will not \"think, feel, and reason\" alike, nor represent with equal efficacy, i.e. not homogenous, even within a group or special interest. In addition, there is the philosophical debate about whether or not boards/committees for special interests should even exist at all, and i f there are to be special interest boards/committees, how would it be decided which -56-special interests ought to be represented (Morone and Marmor 1981) (Singer 1995). With boards/committees meant to serve the public good, much discussion arises concerning whether these boards/committees may in actuality represent a special interest or only a segment of the population. In terms of personal characteristics, there has been a rather consistent observation that public participants are well educated, middle aged or older, and have a higher socioeconomic status (Duvall 1971) (Bracht and Tsouros 1990) (Perlmutter 1973) (Piette 1990) (Singer 1995) (Klein and Lewis 1976) (Lomas et al. 1997). Duvall (1971) reasons that these individuals are generally more informed, more likely to feel efficacious about their ability to influence decisions, and have the time and money (Singer 1995) and skills to participate. Metsch and Veney (1976) also report that previous participatory experience contributes to effective participation. Underlying the above description of the demographics (characteristics) of individuals on boards/committees is the assumption by some that a diverse membership based on such characteristics is preferred. This assumption relates to descriptive representation, which prescribes who representatives should be, not what they do (Morone and Marmor 1981). However, the emphasis on descriptive representation may detract from an emphasis on the accountability of the representatives. Although the Thesis focuses on public participation boards/committees, the public can be involved in other ways including: public hearings, opinion polls, referenda, etc. In a study on government consultation of the public, Lomas and Veenstra (1995) concluded that the current methods of consultation in Canada do not truly bring in the general public - do not expect to hear the views of the general public with any public participation process (Abelson and Lomas 1996). Rather, consultation is still dependent on the \"civic-minded, motivated, or interested citizen\". In their study, Abelson and Lomas (1996) obtained a poor response rate (5.8%) of randomly selected citizens in Ontario who were invited to consultations and actually showed up. The citizens who responded, compared to the general population in Ontario, were better educated, more middle-aged, -57-and 3 times more likely to be employed in the area on which they were being consulted (health and social services). However, the demographic characteristics described above do not necessarily dictate who members on boards/committees feel they represent. Substantive representation (vs. descriptive) is who representatives look after and whose interests they pursue, not what the representatives look like. There is mixed evidence in the literature about whether or not representatives really represent who they're supposed to represent. For example, representatives who tend to be the most vocal or who volunteer may be the least representative of the community (Sawyer 1995) (Metsch and Veney 1976) (Notkin and Notkin 1970). In fact, in the case of Health Systems Agencies in the United States, Morone and Marmor (1981) reported that many of the representatives had no idea for whom they spoke. On the other hand, Lomas et al. (1997) found that almost 75% of respondents to a survey of Canadian health boards chose \"all of the local citizens\" as the group to whom they felt most accountable for their decisions, and over 70% felt they represented everyone in their locality. Thomson (1973) questions whether or not the priorities of community leaders are the same as those of the majority of citizens. In the case of a public participation experience in Nepal, the community members held different views on the quality of services provided from those held by health committee members (Sepehri and Pettigrew 1996). Indeed, within any community, there are different groups who have different health interests (Woelk 1992). On the contrary, Conway et al. (1997) found substantial agreement in priorities between community members and District Health Council members in the United States. However, some researchers note that representatives, even if they were \"true\" representatives to begin with, can lose touch with the community over time and become less representative; being involved may change a representative's outlook (Brieland 1971) (Feingold 1974) and who they feel accountable to (Notkin and Notkin 1970), while others may no longer feel the need to liaise with the -58-community (Piette 1990). Both Parker (1970) and Piette (1990) recognize the importance of mechanisms to ensure feedback of information from representatives to the population. Also significant is the gathering of information and feedback from the community to the public participants. In fact, some researchers feel that a community board/committee can not function effectively without some link with the community (O'Neill 1992) (Galiher et al. 1971). However, in a study of the training needs and desires of 3 policy-making boards of Neighbourhood Health Centres in the United States, Parker (1970) found that the board members did not feel that the relationship between the board and the community was as important as the project staff had expected. Some members did not feel that they had a well-developed sense of community responsibility, while others preferred to function as a closed group without further community involvement to the extent that community involvement was felt to obstruct the effectiveness of the board. Cathcart (1970) notes that consistent, formalized consumer attendance at board/committee functions can be a valuable means of achieving wider consumer participation. However, Cook et al. (1988) observe that all members of a subgroup may not be reached through any one organization. For a project to succeed, it must be known and acceptable to a range of community members who are willing to participate in it. Abelson and Lomas (1996) list strategies that have been used to make information available to the public: mass dissemination (newspaper inserts, press releases, television); selective dissemination to specific individuals and organizations; restricted dissemination to those requesting it; and minimal dissemination that requires people to obtain information by travelling to an office. Although descriptive and substantive representation have been discussed above, the following concept has not - that representatives can not just voice the views of the constituents, but should also voice his/her own judgements. Sometimes the desires of the public may be against the best interests of the public. This line of thought is reflected eloquently in the words of Edmund -59-Burke, a British statesman and senator 1729-1797, in his speech to the Electors of Bristol November 3,1774: \"[A representative's] unbiased opinion, his mature judgement, his enlightened conscience, he ought not to sacrifice to you, to any man, or to any set of men living...Your representative owes you, not his industry only, but his judgement; and he betrays, instead of serving you, i f he sacrifices it to your opinion...If the local constituent should have an interest, or should form a hasty opinion, evidently opposite to the real good of the rest of the community, the member for that place ought to be as far, as any other, from any endeavour to give it effect.\" 2.2.3.4 Roles and Responsibilities of Public Participants on Boards/Committees 2.2.3.4.1 The Purpose of Public Participation Public participation can either be viewed as an end in itself or as a means to an end. However, it isn't always clear what the goals or values underlying public participation are, or should be (Charles and DeMaio 1993) (Louw et al. 1993) (Kweit and Kweit 1981). Indeed, Hunt (1990) notes that success in public participation is easier where a common goal is clearly discernible. Thus, the goals and functions of public participation need to be stated explicitly, rather than assumed (Brownlea 1987) (Metsch and Veney 1976) (Bracht 1990) (Galiher et al. 1971) (Roche 1981) (Bracht and Tsouros 1990) (Potapchuk 1991) (Stone 1992). However, in her discussion on health policy, Walt (1994) suggests that policies are couched in fairly general terms. This allows for considerable discretion in the hands of those implementing policies. A clear and specific delineation of goals and functions should guide the work of the public participants as well as those implementing public participation programs. The following elements would need to be addressed: representation; level of participation; and topics/areas of responsibility (from Charles and DeMaio's framework 1993). One more cautionary note regarding roles and responsibilities: the functions of public participants may change over time (Ugalde 1986), since participation processes are not static. -60-2.2.3.4.2 Representation Who are these public participants working for and who do they represent? Various positions are possible, but not necessarily mutually exclusive. For example, public participants may represent: a community; consumers of a particular service; or a organization/agency (to the community/consumer). 2.2.3.4.3 Level of Participation In the Charles and DeMaio (1993) framework, the \"level of participation\" dimension includes consultation, partnership, and dominant citizen control; these were meant to clarify \"public participation\". Unfortunately, in many instances the level of participation with which public participants are to be involved is not clearly specified. A n obviously important issue concerning the level of participation is whether or not a public participation committee should or should not be advisory. Poor and minority groups tend to feel that advisory groups lack the power to effectively change the health delivery system and that meetings of such groups lead to talk rather than to action (Notkin and Notkin 1970)(Johnson 1970)(Silver 1973)(Brownlea 1987). In fact, Kweit and Kweit (1981) conclude that citizen boards (legally authorized to determine policy) tend to have greater impact than did citizen committees (only advisory functions). Charles and DeMaio (1993) summarized that many examples of lay participation are restricted to consultation, a low level of participation. Low levels of participation are not usually associated with any financial authority or control. However, it has been recognized that financial control has a significantly greater potential to effect change than does an advisory role (Louw et al. 1992) (Kweit and Kweit 1981) (Brieland 1971). It is funding which makes or breaks a program, not advice. On a more upbeat note, Piette (1990) suggests that even i f participation is limited to an advisory role, participation through formal mechanisms may be successful and lead to -61-challenging of authorities. However, Abelson et al. (1995) found that both randomly selected citizens as well as interested citizen attendees at town hall meetings tended to prefer a consultative role than take responsibility for decision making for health care and social services. Caution must be applied to this finding though because these may have been interested citizens who felt their role should be consultative, i.e. interested citizens who feel more citizen authority is appropriate may not attend town hall meetings for consultative purposes only. 2.2.3.4.4 Topics/Areas of Responsibility for Public Participants There is no magic formula to decide the topics/areas of responsibility for public participation board/committees. It depends not just on the level of participation, but also the decision making domain (macro- or system-level, service, or treatment), the role perspective (user or public policy) (Charles and DeMaio 1993 framework), and the type of treatment, service, etc. that is the issue at hand. However, Brownlea (1987) feels that the areas of participation, both desirable and perhaps undesirable, should be identified. Researchers list and discuss a great variety of areas of responsibility in which public participants have been involved, but rarely emphatically pass judgement on what public participants should or should not be responsible for. This is probably partly due to the fact that researchers often describe rather than analyze areas of responsibility for public participants. Moreover, unclear specification of the dimensions of participation impedes any analysis of the appropriateness of areas of responsibility. Table 13 lists some descriptors of areas of responsibility as extracted from the literature; this list is not exclusively for public participation on boards/committees. -62-Table 13: Descriptions of some areas of responsibility as extracted from the literature REFERENCE AREAS OF RESPONSIBILITY Richardson and Waddington(1996) Priority setting for allocating resources - the public expresses an opinion on what kinds of care are wanted. Brieland (1971) Matters affecting geographic service areas: program practices; service boundaries; hours; fees; and policies for hiring people from the community. Ardell(1970) Encourage institutions to develop programs consistent with regional objectives. Create systems for data collection and analysis. Study area problems and resources. Review and comment on local grant applications. Establish health goals and objectives. Identify problems. Inventory resources. Set priorities and a timetable for action. Provide information and consultation to policy makers and others. Prepare/revise health plans. Notkin and Notkin (1970) Identify health needs. Inventory resources. Establish priorities. Recommend courses of action. Site and personnel selection for health services. Piette (1990) Express the opinions of the local population about the effectiveness of services provided. Survey of facilities for patients and standard of care. Advising on collaboration between health services and related local authorities' services. Receiving and dealing with individual complaints. Annual reports of activities to the population. Providing information to the public. Providing information to the health authorities. Comments on hospital closures. Galiher et al. (1971) Assure the decisions of policy making health bodies are based on awareness of the needs and interests of consumers. Provide continuous liaison with the population served. Monitor the delivery of health services from the point of view of the consumer (effectiveness and cost). Silver (1973) Decision making for health services: location and size; solo vs. group practice; number and types of providers needed; recruitment procedures for providers; and duration and content of a health education curriculum. Metsch and Veney (1974) Facilitate both the delivery and community utilization of ambulatory care. Anderson and Kerr (1971) Determine community health services. Provide information about health services to the public. Final approval for hiring. Preparing meeting refreshments. Gathering information about community health problems. Kimmey(1981) Recognize and analyze priority health status and health care problems and needs of the area, and select from alternatives on meeting those needs. Develop long and short term plans. Implement programs. Review and recommend approvals/disapprovals of projects regarding health facilities/services. -63-REFERENCE AREAS OF RESPONSIBILITY Lomas etal. (1997) Within provincially defined broad core services: local planning; setting priorities; and allocating funds and managing services for greater effectiveness and efficiency. Singer (1994) Health care resource allocation. Howard (1972) Design and implement programs, managing the budget of these programs, and hiring and firing of staff. Lomas etal. (1995) Priority setting and assessing needs. Allocation of funds and ensuring effectiveness and efficiency of services. As seen in Table 13, the possible areas of responsibility for public participants are quite diverse. Abelson and Lomas (1996)'describe 4 categories of content area for participation: single domain (e.g. hospital closure); multiple domains (e.g. restructuring of the health care system); largely technical (e.g. facility assessments to upgrade costs); and largely non-technical (e.g. which site to close). These categories can be used to clarify the different areas of responsibility. As to the question of what areas of responsibility could or could not be included for public participation, differing points of view exist. Some researchers have discussed the distinction between professional and citizen areas of responsibility. McDonald and Chavasse (1997) explain that health professionals normally provide scientific knowledge of what constitutes medical care and health (Morone and Marmor 1981), while community members know best about information on local needs and resources in relation to health, and can express their opinions on what kinds of care are wanted (Richardson and Waddington 1996). Hochbaum (1969) explains that consumers are the final and proper judges of what kinds of services they want, how they want them delivered, what form they should take, and in what setting they should be provided. Creighton (1992) distinguishes professional decisions from political decisions; professional decisions are usually issues of \"feasibility\", not \"desirability\", while political decisions are perceived to affect some people more than others. Professionals are not necessarily better qualified than the lay public in making political and moral decisions (Hiller et al. 1997). Some believe citizens should not be involved in broad medical and clinical matters (e.g. how -64-much of a drug to prescribe), since they do not have the knowledge health professionals do (Madan 1987)(Hochbaum 1969). At least, citizens should not be expected to become technical experts (Ellenburg 1981) or perform tasks requiring specialized knowledge or advanced training (Madan 1987). However, citizens may expect a share in decisions concerning aspects they are not equipped to judge or handle, although they may be fully aware of their lack of competence (Hochbaum 1969). Other researchers believe that community representatives may follow the most socially valid path (Winett 1991). On the other hand, Sparer et al. (1970) observed that although health care providers were unwilling to turn medical and professional matters over to a community group, no consumer group claimed jurisdiction over clinical judgements. In one instance the technical details of health planning bewildered inexperienced board members (Morone and Marmor 1981). Thus, when asked to judge the suitability of different bodies for making all local health care and social service decisions, participants strongly preferred some form of combined decision making body (e.g. experts, interested citizens, provincial government, elected officials). Others believe the public could be involved in professional areas of responsibility. Consumers may overcome the difficulties in understanding the technical language and planning jargon of proposals and plans via synopses and summaries (Kimmey 1981). In a study of advisory committees that included consumer representatives in the formulation and implementation of medical policy concerning newborn screening programs in the United States, Hiller et al. (1997) conclude that lay citizens can assist in the formulation of sound public and medical policies requiring an understanding of complex scientific and medical information. Abelson and Lomas (1996) expect extensive community mobilization around narrow, clearly defined issues with clear targets for mobilization, e.g. abortion. Conway et al. (1997) note that socially-related health problems are the issues of greatest concern to community representatives and members. In addition, Winett (1991) explains that not every problem is solvable at the local level, -65-e.g. changing the depiction of alcohol on TV requires national initiatives to influence guidelines. From the perspective of members of the public, there was concern that public participants should not be required to make life-and-death decisions nor specify which health services should be denied (Richardson and Waddington 1996). Finally, Piette (1990) explains that health may be promoted through a common council which has no managerial functions. In summary, there is no consensus on what the areas of responsibility for public participants should or should not be. However, a distinction can be made between technical (professional) vs. non-technical (citizens) matters. In addition, narrow issues and socially-related health problems elicit greater mobilization of citizens, although they may not want to make life-or-death situations, nor do they want to specify health services that should be denied. 2.2.3.5 Planning and Managing Public Participation Because public participation can itself be considered a program that is to be implemented, it must be well planned and managed. Though few public participation researchers may argue with this, few also propose any systematic approach to planning for or managing public participation programs. However, Creighton (1992), in his book on involving the community in decision making (generic and not specific to health), does make such a proposal. 2.2.2.5.1 Planning for Public Participation (Creighton 1992) Creighton discusses the following in his book on citizen involvement: why a public participation plan should be prepared; who is responsible for developing the plan; what should be in the plan; and length of the plan. Public participation plans are important for a variety of reasons. First, the plan ensures that a careful analysis will be made of how public participation fits into the decision making process, which parts of the public are likely to be concerned, and how their -66-comments can be most effectively solicited. Second, preparation of a plan provides an opportunity for discussion about expectations as to what form of public participation is needed. Third, a documented plan helps to show the rationale for the level of public participation chosen. Who is responsible for developing the public participation plan? The \"program manager\" or \"project manager\" (or synonymous title) is responsible for preparing a plan, and making the entire process happen, though he/she may draw on others to assist in preparing the plan. What should be in the plan? Creighton provides a list of items which, as a minimum, should be included in a public participation plan. The context for public participation is provided by a description of any preliminary consultation and of the probable major issues. By identifying key affected individuals and groups, the level of probable public interest can be gauged. The actual involvement of the community is in the decision making process and sequential plan of activities. Issue management activities will help the program manager anticipate and prepare for major issues likely to emerge during the course of the public participation program (Roche 1981). Creighton recognizes the importance of including evaluation as part of the plan (vs. developing an evaluation plan after implementation has already started) and suggests designating review points to assess how the plan is working (or not working). The final items Creighton lists are budget and staff resources (usually an internal document) once the specific public participation activities to be undertaken have been specified. Though Creighton lists items for inclusion in a public participation plan, he feels there is no set length for such plans, as long as the plan permits development of budgets and staff time estimates, the assessment of the adequacy of the program, and clearly communicates to the public what can be expected. -67-2.2.3.5.2 Training and Orientation One item that was not really addressed in Creighton's (1992) public participation plan was training and orientation of both public participants and health professionals, since public participation introduces people to new roles and interactions. The literature discusses 2 types of orientation/training for public participants: orienting the public participants to the organization, agency, etc. that they will be a part of; and training public participants for interaction in a formal atmosphere. Early orientation of public participants is encouraged by several researchers. Bracht (1990) suggests orientation and information sessions about the scope of local issues and about the efficacy of cooperative action. Training can also include first an overview of the health planning situation and then focus on individual problems (Glenn et al. 1981). Parker (1970) suggests the purpose of orientation is to narrow or eliminate the gap of understanding between professionals and consumers. The preparedness of consumers as board/committee members may be the most salient factor in meaningful participation (Pecarchik et al. 1976). Who should be involved in the training of public participants? Orientation of consumer groups by project staff has proven helpful (Sparer et al. 1970). Metsch and Veney (1976) and Kimmey (1981) note that consumers benefit most from on-going training programs which they themselves helped to plan, since the training agenda has to suit the participants' needs. Training may include the following: purpose, functions, and roles of key stakeholders (Kimmey 1981); broad understanding of basic concepts and terminology (Kimmey 1981); leadership development (Brieland 1971) and training of chairpersons (Piette 1990); skills necessary to handle the problem solving process (Metsch and Veney 1974) and working together (Howard 1972); and advanced technical content areas to deal with complex planning and review issues (Kimmey 1981). The content, sequence and timing of training is important, but should be flexible enough to accommodate -68-changing priorities (Parker 1970). Parker (1970) also notes that informal, primarily verbal training techniques, including skits and role play, are effective methods for training. Kimmey (1981) adds that due to limited time and broad backgrounds of members, materials for individual instructional use are important - written guides, fact sheets, slide-tape presentations, and video tapes. A variety of modalities for orientation and training should be used. Sullivan (1995) recommends that workshops, newsletters and/or manuals be developed to summarize the structure and function of different parts of the health care system. These educational tools should be in plain language rather than in a technical discipline-specific language. Health professionals and service providers also need orientation and training to develop an understanding of and the skills required for resolving conflicts with consumers (Hochbaum 1969), especially if they sit on policy making or advisory boards with public participants and share decision making responsibility (Metsch and Veney 1976) (Galiher et al. 1971). Metsch and Veney (1976) report that success occurs most often when providers are made aware of the high value placed on consumer participation before the consumers join the system. Two final perspectives on training must be noted. First, Galiher et al. (1971) and Kimmey (1981) emphasize that training should be viewed as an on-going process, since training concerns may differ depending on the maturity of a board/committee (Lomas et al. 1997). Second, because training should be ongoing, the needs of members and staff should be assessed at successive points in time. 2.2.3.5.3 Resources for Public Participation Public participation efforts need adequate and appropriate resources (Thompson and Hauge 1975) (Ellenburg 1981) (Hildebrandt 1996) (Hunt 1990) (Galiher et al. 1971) (Brownlea 1987) (Piette 1990) (Bracht and Tsouros 1990) (Metsch and Veney 1976). These resources (Thompson and Hauge 1975) include: staff support for public participation; funds to support public participation -69-boards/committees (training, etc.); the channeling of information from the representatives to the community and vice versa; and compensation to citizens (transportation, child care, etc.). There has been little discussion in the literature regarding the following details: who would constitute the staff support and what their role would be; what are the costs of other public participation efforts and details of the budget; and what kind of information are needed by public participants. However, Checkoway (1981) suggests effective staff support should have skills in advocacy planning or community organizing and should be known as \"health planning leaders\" with a determination to expand participation. Moreover, the following more detailed responsibilities for support staff were identified in a guidebook for community participation in community development for the United States Model Cities program (Thompson and Hauge 1975): \u00E2\u0080\u00A2 initially organize the citizen participation process, sending out notices of meetings, and where necessary, managing elections; \u00E2\u0080\u00A2 providing necessary administrative support to the citizen participation process; facilitating continuous communication between citizens, city officials and city agencies; \u00E2\u0080\u00A2 doing research and analysis on community needs and possible programs; \u00E2\u0080\u00A2 explaining program technicalities, governmental processes, etc. to citizens; \u00E2\u0080\u00A2 organizing public meetings and hearings; and \u00E2\u0080\u00A2 keeping citizens up to date on the status of community development activities. 2.2.3.6 Evaluating Public Participation With the complexity in describing and defining public participation, it is no wonder the evaluation of it is just as confusing - not that evaluation is easy to begin with. First, there are 2 types of evaluation: process (formative) and outcome (summative). \"Process\" can be thought of as the implementation of a program, while \"outcome\" can be viewed as the ultimate result the program is supposed to achieve. However, programs often do not clearly identify the means (processes) nor the -70-end (outcomes) although the perception is a major determinant of the definition of public participation (Tatar 1996). Second, empirical evidence may not always be available. Although program strategies should ideally have a direct link to desired outcomes (shown by empirical evidence), there may be a multitude of direct and indirect links between program strategies and outcomes. Thus, the measurement of effects is made difficult. There is no magic formula for conducting evaluations. However, Rosener (1978) proposes an evaluation research methodology for measuring the effectiveness of citizen participation. The \"effectiveness\" of citizen participation is determined by a comparison of the current state to the goals and objectives outlined for the participation program, whatever those goals and objectives may be. Although only Rosener's matrix is discussed here, it does not mean it is the only evaluation methodology available. However, it is included because it makes no assumption as to what the goals and objectives of public participation should or should not be. The goals and objectives of public participation are diverse, since public participation can be viewed as either a means or an end. For example, evaluations of public participation have included factors which describe the breadth of participation, such as needs assessment, leadership, organization; resource mobilization, and management (Rifkin et al. 1988). Evaluations of participation have also included both quantitative and qualitative elements. Quantitative indicators are associated with numbers, such as how many citizens attend a meeting. Qualitative indicators are associated with the quality of participation, such as the degree to which citizens have influenced decision making. Wandersman (1980) suggests the effects of participation may occur at the \u00E2\u0080\u00A2 individual, organizational, and community levels. One of the potential outcomes of public participation is improved outcomes for health. However, it would be hard to distinguish whether the effect(s) was caused by public participation or from other factors. Pritchard (1986) feels that improved outcomes for health can be inferred by changes in health-maintaining behaviour in a -71-favourable direction. 2.2.2.6.1 Rosener's (1978) Evaluation Research Methodology for Measuring the Effectiveness of Citizen Participation The first step to evaluating citizen participation is to determine whether the participation program is perceived as an end in itself, as a means to an end, or a combination of both, i.e. what are the goals and objectives? More specifically, whose goals and objectives are they - citizens, public administrators, elected officials, or a combination of these? A second question that needs to asked is how will it be known that there is a cause-and-effect relationship between what is being proposed as a participation program/activity and the achievement of the desired goals and objectives? For conceptual clarity, Rosener suggests the use of the \"participation evaluation matrix\" (see Figure 6), which has 4 quadrants. Figure 6: Rosener's (1978) Participation Evaluation Matrix Agreement on program goals and objectives (B), whose goals and objectives they are, and the criteria by which success or failure will be measured. Knowledge of a cause/effect relationship between a participation program/activity (A) and the achievement of specified goals and objectives (B). Complete Incomplete Yes I II No III IV In quadrant I, there is agreement on goals and objectives and fairly complete knowledge of a cause-and-effect relationship between some specified participation program (referred to as A), and the achievement of the goals and objectives (referred to as B). Rosener calls this the \"healthiest -72-evaluation environment\". In quadrant II, there is agreement on B so it would be possible for B to be achieved; however, it would not be known whether or not A was partially or totally responsible for producing B. In quadrant III, there is lack of agreement on B, though there is reliable knowledge that A produced B - a program might be perceived as being effective for one group, but not for another. In quadrant IV, there is no agreement on B and incomplete knowledge of the cause and effect relationship between A and B. Rosener notes that unfortunately many participation programs fall into quadrant IV. The utility of the participation evaluation matrix lies in the fact that assumptions are forced to be made explicit and that the reliability of assessing a participation program, given its design and characteristics, can be determined. Moreover, there is no judgement on what the goals or objectives of public participation should or should not be, just what they are stated to be, and evaluation based on them, i.e. the matrix can be applied in a variety of public participation programs. 2.4 SUMMARY - LITERATURE REVIEW Although public participation has been mandated (policy), people interpret the term public participation differently. Various researchers have developed frameworks to help clarify public participation, including: different approaches to public participation; dimensions of public participation; techniques for public participation; and relationships between factors and effects of participation. As the current study focuses on public participation on committees, this was the major focus of the literature review as well, including the topics: mobilizing the public; representation, roles and responsibilities, and management and evaluation of public participation. The complexity of public participation was supported by a review of the literature concerning these topics. Consistently emphasized by researchers is the need for clarification of the purpose(s) and scope of public participation, since this in part contributes to the complexity of public participation. -73-THE THESIS - APPROACH AND METHODOLOGY 3.1 RATIONALE A review of the literature shows that despite several decades of research on public participation, ambiguity in defining the purposes, dimensions, and scope of involvement persists. Though various useful frameworks have been proposed, the more current studies of public participation still fail to explicitly clarify public participation, and the roles and responsibilities of public participants. Yet, process evaluations of various public participation programs are still conducted without systematic approaches. Consequently, the results of these studies tend to be less than generalizable. In the current study, an attempt at using a systematic approach is used. The context for public participation has already been described (Section 1). The BC Ministry of Health, in 1993, developed the policy New Directions, which stated that \"greater public involvement in the health system will ensure that health needs and services are more closely matched [italicized here for emphasis]...increased participation is an essential part of a responsive and flexible health system\". Although New Directions is now defunct and has been revamped as Better Teamwork, Better Care, the structures that were created for public participation still exist (RHBs and CHCouncils). The frameworks for public participation proposed in the literature mainly help to clarify who participates, who participants are supposed to represent, and the level of participation. Although the . roles and responsibilities for public participants have been recognized as unclear, no explanation has been proposed as to why they are unclear. These roles and responsibilities, whether they are clear or not, are supposed to guide the work of the public participants, and thus can be used as a basis for a process evaluation of how the roles and responsibilities play out in actuality vs. the rhetoric (what is stated). This is the systematic approach that is used in the current study. -74-3.2 OBJECTIVES More specifically, the objectives of this study are: \u00E2\u0080\u00A2 to describe the development of public participation committees in the Vancouver/Richmond Health Region (Section 1); \u00E2\u0080\u00A2 to place the current public participation experience in the Vancouver/Richmond Health Region into perspective (definition); \u00E2\u0080\u00A2 to examine the clarity of the stated roles and responsibilities for Community Health Committees and Population Health Advisory Committees in the Vancouver/Richmond Health Region; \u00E2\u0080\u00A2 to examine the differences and similarities between stated roles and responsibilities and actual roles and responsibilities of the public participation committees, as perceived by committee members and the committee support staff; \u00E2\u0080\u00A2 to examine the reasons for the contrasts observed; and \u00E2\u0080\u00A2 to examine what roles and responsibilities are desired for public participants. 3.3 METHODOLOGY The project is a case study which compares the actual vs. stated roles and responsibilities for CHCs and PHACs in the Vancouver/Richmond Health Region. Data were collected via semi-structured questionnaires. The questionnaire items were based on the stated roles and responsibilities for public participants (Bylaws for CHCs and Terms of Reference for PHACs; see Appendices B and C), and themes drawn from the literature. 3.3.1 Case Study Approach - Rationale Unless referred to otherwise, the information in this section on case studies is based on Chapter 6 of Veney and Kaluzny (1991). A case study is \"the selection and observation of a single unique activity, organization, or entity (or of one example from a number of activities, organizations, or entities), and the formation of conclusions based on the observations\". The usefulness of case studies are described as follows: -75-\"A case study is a particularly useful tool when evaluators and practitioners want an insight into the entire working of a program. In this form the case study provides both detailed and extensive knowledge of selected aspects of a program or their operations and a broad overview of the total program...a case study, unlike other forms of evaluation, is often exploratory [italicized for emphasis here]...\" 3.3.1.1 Weaknesses There are limitations to the case study approach. First, most information derived from case studies are subjective, i.e. no control group. However, the current study focuses on the perceptions of CHC and PHAC members and staff on the process of public participation. Perceptions, by then-nature, are subjective but no less valid than data obtained through standardized quantitative measures. The type and usefulness of the data depend on what the data will be used for and how decision makers will use that information. Second, observation in a case study creates an unnatural setting, and conclusions are limited; the causal importance of a program can not be established. Case studies may be more appropriate, then, for process evaluation rather than outcome evaluation. 3.3.1.2 Strengths On the other hand, the case study approach has several strengths. First, information can be obtained at any time, unlike experiments or survey research strategies which need to be planned at the beginning of a program. However, one can view a case study as an initial step in providing the basis for decision making about a program or in setting up an experimental design or survey research in the evaluation of a program. Second, case studies can be relatively inexpensive. Third, data from case studies are in-depth (Patton 1990). 3.3.1.3 Comments on Use The case study approach for this Thesis is viewed as a tool for evaluation and decision -76-making. The conclusions gained from case study evaluations can influence important program decisions regarding relevance, progress, efficiency, effectiveness, and impact. In particular, the current study explores the progress (process) of public participation in the Vancouver/Richmond Health Region. \"Process...concerns whether inputs, processes, and outputs meet some type of normative predetermined standards for their level of operation or success.\" Often however, normative predetermined standards do not exist, as is the case for the public participation program under study. Thus, the approach of this study is to use the stated roles and responsibilities as the standard for evaluation - a comparison and contrast of the stated vs. actual roles and responsibilities of the CHCs and PHACs. The study is viewed as a process evaluation and case study of the CHC and PHACs; results of the study may be used to gauge the progress of these committees in accepting responsibilities and to determine which responsibilities need to be further advanced, modified, etc. 3.4 DATA COLLECTION METHODS Three data collection methods were employed in this study: a source document review; a semi-structured written questionnaire; and feedback sessions. 3.4.1 Source Document Review - Chronology and Description Documents that reference the development of the public participation process in BC and in the Vancouver/Richmond Health Region, dating back to the Seaton Commission of 1991, were collected. These documents were requested from the Ministry of Health (MOH) and the Vancouver/Richmond Health Region (V/RHR). Examples of documents collected include: background material on how the CHCs and PHACs were developed; stated roles and responsibilities for the CHCs and PHACs; correspondence from the M O H and the Board (V/RHB) to the CHCs and -77-PHACs; and minutes of the Coordinating Committees of the CHC and the P H A C (the Coordinating Committees are the committee liaisons between the CHCs and PHACs and the V/RHB). A chronological description of the public participation process is based on these documents (Section 1). As well, questionnaires were partly based on concepts and events of the public participation process in the V/RHR. 3.4.2 Semi-structured Written Questionnaire The decision to use a semi-structured written questionnaire was based on several considerations. First, this is not the only study on the implementation of New Directions. A related study in progress focuses on the development and evaluation of a model of community participation in health system decision making (Frankish, personal correspondence). In the spirit of collaboration, this Thesis was done in conjunction with Frankish's study. By combining our research, subjects were only approached once (there is overlap in the target population between the 2 studies). It is more feasible to approach subjects once only by combining our research, rather than approach them twice, each separately. While the Thesis provides a more in-depth analysis of roles and responsibilities, Frankish's study covers a broader range of variables that affect public participation in health system decision making. Frankish's study would have involved the distribution of questionnaires to CHCs only in the V/RHR. However, with this Thesis distribution is extended to PHACs as well, with the design of the questionnaire based both on the model being developed by Frankish and on the objectives of this Thesis. Since qualitative approaches have been suggested as appropriate methods of data gathering (complemented by quantitative data whenever possible) for the changing circumstances of policy development (Milio 1990), open-ended questions have been included to complement the quantitative questions. -78-3.4.3 Development of Survey Questions The officially stated roles and responsibilities were identified through Bylaw No. 1, article 4.2 for CHCs and the Terms of Reference for PHACs. The perceived \"actual\" roles and responsibilities were identified through a semi-structured questionnaire. The questionnaire was developed using various sources: \u00E2\u0080\u00A2 the literature was searched for relevant themes or questions that may be used; \u00E2\u0080\u00A2 the Bylaws for CHCs and Terms of Reference for PHACs were used as the basis for another set of questions (phrased based on these stated roles and responsibilities); and \u00E2\u0080\u00A2 generic questions were either developed or obtained from the literature. With generic questions, comparisons could be made between the CHCs and PHACs in this study, and between the findings of this study and other studies (where the same or similar question is used). An example of a generic question might be whether or not a role is clear. A draft of the questionnaire was piloted with 4 previous committee members, 2 from the CHCs and 2 from the PHACs. Comments and suggestions were considered in the development of the final draft of the questionnaire. The questions were also developed based on the potential contributions of the findings to knowledge for both academic and community uses (see Tables 14, 15, and 16). The content of dissemination of the findings will be based on these tables. -79-Table 14: Academic and community uses of the Thesis for non-committee-specific questions Question Academic Use Community Use Rate the clarity (vocabulary, vagueness, scope of involvement) of each role/responsibility. In the literature, roles and responsibilities are identified as unclear, but they do not specify which part(s) of the stated roles and responsibilities was unclear or why. The questionnaire seeks to find out what aspects of the stated roles and responsibilities of the CHCs and PHACs in the V/RHR are unclear and why. The V/RHB will understand what aspect of the roles and responsibilities of the CHCs and PHACs are unclear, if any. This hopefully will encourage them to clarify the roles and responsibilities for the committees. Define assist, advise, governance, and management. A case study of what some public participants understand these terms to mean. The V/RHB will understand how the committees understand the terms assist and advise in the stated roles and responsibilities, as well as the difference between governance and management, whose difference is continually emphasized. Perhaps if these do not coincide with what the V/RHB understand these terms to be, emphasis can be placed on more orientation to the roles of the committees, for new members and ongoing for old members. Indicate the level of involvement for various tasks for the committees. In the literature, tasks for public participants may be referred to, if at all, but the level of involvement for the tasks is not usually delineated. My questionnaire seeks to explore what level of involvement CHC and PHAC members currently have and what they feel they should have. This will clarify to the V/RHB the level of involvement the committee members feel they have and should have. This is an exhaustive list developed from the literature. Perhaps there are tasks the committees want and don't want. Describe what you think the overall roles should be for: CHC/PHAC; CD; Board; and MOH. Descriptions of public participation experiences in the literature lack the perspective of committee members re their role and the role of other stakeholders in relation to them. My questionnaire seeks to explore these perspectives. This will provide the V/RHB with an understanding of how public participants perceive their role and the role of other stakeholders in relation to them should be. Do the perceptions match what is outlined? If not, should anything be done differently based on these results? Demographics: length of membership; age; gender; ethnic or cultural group; education; marital status; household income; work/employment status; and profession. How does the sample compare with other public participation demographics? Are any answers somehow related to these demographic characteristics? Gives the V/RHB a general description of public participants (at least those who responded to the survey). The V/RHB can then know whether or not the committee members are \"representative\". -80-Table 15: Academic and community uses of the Thesis for CHC-specific questions Question Academic Use Community Use Since you became a CHC member, has the Board identified additional purposes and responsibilities for the CHCs? Process evaluation of a stated roles and responsibilities. For the V/RHB, these would be responsibilities that are additional to what the members originally signed on to do (or were aware of). Provides a general synopsis of responsibilities that were added. How complete is community health plan, and as compared to expected? Process evaluation of a stated roles and responsibilities. Provides the V/RHB with the extent of the work of the community health plans as compared to expected. Lists factors that have hindered/helped the planning process - perhaps the helpful ones can be encouraged and the hindering ones resolved. Items of the community health plan. Process evaluation of a stated roles and responsibilities. Provides the V/RHB with the members' perspectives on what the plan includes and what they think of these items and the work they've done or will be doing. (However, one can probably determine the components of the plans by getting a copy of the community health plans.) Integration of services. Process evaluation of a stated roles and responsibilities. Provides a general synopsis of what the committees have done re integration. NHGs - new and existing. Process evaluation of a stated roles and responsibilities. Provides a general synopsis of how the CHCs have assisted the NHGs. Evaluation. Process evaluation of a stated roles and responsibilities. Provides the V/RHB with an idea of where the committees feel they are at regarding evaluation. Table 16: Academic and community uses of the Thesis for PHAC-specific questions Question Academic Use Community Use Contributions to the regional health plan. Process evaluation of a stated roles and responsibilities. Describes how PHACs feel they have contributed to a regional health plan. Research to address the health needs of the identified population. Process evaluation of a stated roles and responsibilities. Provides concrete examples of what kinds of research were recommended by PHACs. Allocation of resources. Process evaluation of a stated roles and responsibilities. Provides concrete examples of what kinds of information re allocation of resources was provided by PHACs. Formal relations. Process evaluation of a stated roles and responsibilities. Describes the most useful aspects of formal relations of the PHAC with others. These aspects can be encouraged. Representativeness. Process evaluation of a stated roles and responsibilities. PHACs are supposed to be representative of their identified populations. Where they are not, the V/RHB can develop strategies to recruit a more representative mix. Evaluation. Process evaluation of a stated roles and responsibilities. Provides the V/RHB with an idea of where the committees feel they are at re evaluation. -81-3.4.4 Distribution of Questionnaires Questionnaires were distributed to every member of the CHCs (N=50) and the PHACs (N-57), the community development staff who work with the committees (N=l 3), and the regional staff (N=3). The following committees were not included for various reasons: Women's P H A C (was being re-established); Gay, Bisexual, Lesbian, Transgender PHAC (was not formed yet); and the Richmond CHC (just being established). The total population size was 123. The population consisted of only those members and staff who, at the time of contact (April and May 1997), were a volunteer (committee member) or staff. Questionnaires were distributed during the last week of April 1997 and the first week of May 1997, either through the mail or at a committee meeting. Ideally, the researcher would be a guest at the committee meetings during this period to introduce the study and distribute the questionnaires. The CHCs and PHACs usually meet once or twice each month. When the date of the meeting coincided with the distribution period and the committee had room in their agenda, the researcher attended the meeting as a guest. When the date of the meeting coincided but the student could not attend (e.g. 2 committees having a meeting on the same evening), the community developer or committee chair was asked to distribute the questionnaires. Where the date of the meeting did not coincide with the distribution period, questionnaires were sent by mail with the committee minutes. The student attended less than half of the 12 committees' meetings. Each potential respondent was given a questionnaire package consisting of the following: a cover letter; a summary information sheet about the project; a consent form; a questionnaire; and a self-addressed stamped envelope in which to return the completed questionnaire. The deadline for the return of completed questionnaires was May 16,1997. Follow-up with potential respondents was conducted, but was hindered by the fact that the student wasn't allowed access to home or business phone numbers or addresses of individual committee members; the only access the student had was -82-via the committee offices and the community developer staff. Follow-up consisted of 3 written reminder notices; all of these were distributed at either a committee meeting or mailed to committee members through the committee office. The first reminder was distributed a week before the deadline, one just after, and the final one 2 weeks after the deadline. Questionnaires were not re-sent, as it was decided that getting the community developer staff to encourage the committee members would be more effective. As well, the reminder notice invited potential respondents to call to receive another questionnaire i f they wished. Three committee members requested another questionnaire; however, none of them returned the re-sent questionnaires. Based on feedback from the CDs and comments on completed questionnaires, the following reasons probably affected the return rate negatively: \u00E2\u0080\u00A2 potential respondents felt that the questions were premature; potential respondents felt that the questionnaire was too long; \u00E2\u0080\u00A2 potential respondents felt that the questionnaire was too hard; potential respondents felt that they were pressed for time already with their committee work; \u00E2\u0080\u00A2 potential respondents didn't see the significance of the questionnaire; and \u00E2\u0080\u00A2 potential respondents felt their responses, by answering the semi-structured written questionnaire, would not reflect what they really felt or wanted to say. 3.4.5 Feedback Sessions Since the response rate was low (28%), feedback sessions were used to gather more data and also to verify the results of the questionnaire. It was hoped that preliminary research findings could be presented by June 1997, when the committee term ended for the original members of the CHCs (beginning of June). However, the preliminary results were not presented until September 1997, since questionnaires were received as late as July 1997. The feedback sessions were held with staff (September 3, 1997) and at a Regional Connections meeting (September 27, 1997). The Regional . -83-Connections meetings were held on the last Saturday of each month as a venue where members of the V/RHB, the CHCs, the PHACs and NHGs, and the staff could exchange information and share their ideas. A report of \"preliminary\" results was distributed to members of the committees and to the staff in September 1997. Individual interviews were also solicited through a written notice though none were forthcoming. Feedback was not obtained via the Coordinating Committees because they were receiving many requests for presentations. Interest in the study results may have decreased as the committees were spending more of their time on the $5 Million Incentive Fund. 3.5 ANALYSIS OF RESULTS A semi-structured questionnaire was used, which included both close- and open-ended questions. Close-ended answers were coded, and the raw data entered into and summarized using SPSS (Statistical Package for the Social Sciences). For open-ended answers, the raw data were organized by question. Codes were then created for any themes observed among the answers, and these codes were then tabulated. Since the number of members on a committee was mainly 10 or less, results could not be compared between one CHC and other CHCs, between one PHAC and other PHACs, nor between CHCs/PHACs and staff. However, themes could be compared between CHCs (as one group) and PHACs (as another group). 3.6 DISSEMINATION OF FINAL RESULTS A copy of the Thesis will be forwarded to the regional staff (i.e. managers). In addition, a summarized version will be distributed to each of the CHCs and PHACs, and the V/RHB. The findings and recommendations will be presented at a venue where all the committee members, staff, and V/RHB members will be invited to attend. Submissions will be sent to appropriate journals. -84-QUESTIONNAIRE RESULTS This section provides the results of the questionnaires in a question-and-answer format. Presented first are the response rates and demographics, and then the results of questions that were common to all the surveys (CHCs, PHACs, and staff). Following this, the results for CHC-specific and PHAC-specific questions are presented. The CHC survey asked about roles and responsibilities related to clarity, health planning, integration of health services, involvement of the community, evaluation of health programs, and level of involvement. The PHAC survey asked about roles and responsibilities related to clarity, health planning, representation and involvement of the identified population; evaluation of health programs and services, and level of involvement. The topic areas for the CHC and PHAC questions were similar; however, the specific questions asked differed since their roles and responsibilities were stated differently. 4.1 RESPONSE RATE A total of 123 people were surveyed (one staff person received 2 questionnaires since the individual worked with 2 CHCs). Thirty-four out of 123 people responded, giving a return rate of 27.6%. Shown in Table 17 are the response rates by group. -85-Table 17: Response rates for the groups surveyed Group # Responses Received # in Each Group % Response Regional staff 0 3 ' 0 CHC#1 5 11 45.5 CHC#2 1 7 14.3 CHC#3 2 6 33.3 CHC#4 1 9 11.1 CHC#5 2 9 22.2 CHC#6 4 8 50.0 Disabilities PHAC 1 6 16.7 Mental Health PHAC 1 12 8.3 Children and Youth PHAC 4 12 33.3 Seniors PHAC \u00E2\u0080\u00A2 2 8 25.0 Multicultural PHAC 3 10 30.0 Aboriginal PHAC 1 9 11.1 Community Developers 7 13 53.8 Total 34 123 27.6 A total of 15/50 CHC members (30%) responded, and 12/57 PHAC members (21%) responded. None of the regional staff responded (reasons unknown). Although 7 Community Developers (CDs) responded, some worked with more than one committee. Thus, there were effectively 21 CHC \"cases\" and 15 PHAC \"cases\" in total. During contact with the support staff of the committees, it was discovered that at least 13.8% (17/123) of potential respondents were either i l l , on holiday, or (for committee members) inconsistent in attending committee meetings or helping with committee work. These factors may have contributed to a lower response rate. Due to the small sample size, the questionnaire results are presented as frequencies and averages for the quantitative data. Qualitative data are presented as summaries and , wherever possible, verbatim comments of concepts expressed by respondents. Because respondents may express more than one concept in their answers, summing the percentages of respondents who expressed different concepts, for any one question, may add up to over 100%. -86-4.2 DEMOGRAPHIC CHARACTERISTICS Although demographic questions were common to all surveys, they are included here as a separate section from the other questions which were related to roles and responsibilities. The demographic characteristics measured include: length of membership at time of survey; position on the PHAC (for PHAC members only; service providers constitute part of the PHAC membership but not the CHC membership); age; gender; ethnicity /cultural group; education; marital status; total household income (gross); work/employment status; and (if employed) profession/occupation. Length of Membership at Time of Survey The survey period was from May to July 1997. CHCs were established May 1995 and PHACs in September 1995. Half of the respondents had been committee members or support staff for the committees for the whole 19-24 months, i.e. they were there since the designation (start) of the CHCs/PHACs (see Figure 7). In comparison, 56.9% of all committee members and staff (potential respondents) had been there since the designation of the committees. This is based on a comparison of the names of members and staff at the time of, the survey with names at the time the committees were designated. Figure 7: Length of membership/employment (N=34; QU=question unanswered) 60-1 <5 50-150.01 c TJ \u00C2\u00A7 4 0 -QU 7-12 months 19-24 months -87-Also of interest is the fact that overall, there wasn't a dramatic decrease in the number of CHC members overall since May 1995 (from 53 to 50). Although the number of CHC members did not differ overall, there was a more even distribution of the number of members per committee across the 6 CHCs than at the start. On the other hand, there was a considerable drop in PHAC members since September 1995 (from 99 to 57). The drop in PHAC members was partly, but not completely, due to the disbanding of the Women's PHAC. What is the nature of your position on the PHAC? Please tick one of the following. Although this question is specific to PHAC members (12), it is included here as a demographic question. One person (8.3%) did not indicate the nature of his/her position on the PHAC. PHAC member respondents came from a diverse mix of service providers, consumers, and others (neither service provider nor consumer) (Figure 8). Figure 8: Nature of position on PHAC (N=12; QU=question unanswered) 35 - i JO 3 0 -80 Q U 31-40 51-60 71-80 Age in Years Question: What is your gender? 38% of respondents were male (59% female). One respondent did not indicate his/her gender (3%). Question: To what ethnic or cultural group(s) do you belong? It remains debatable how this question should be asked in surveys, i.e. structured or open-ended. In this study, it was presented as an open-ended question as to which ethnicity or culture respondents felt they belonged. Twenty-eight out of the 34 respondents indicated their ethnicity or culture; the following list is mainly in the words of the respondents: 7 Canadians 7 Europeans (respondents indicated the country) 3 Caucasians 2 (White Anglo-Saxon Protestants) 2 Chinese 2 Jewish 1 Latin American 1 Sikh 1 Asian 1 Aboriginal 1 unknown 6 did not answer this question -89-These categories are not necessarily mutually exclusive, e.g. someone who is \"Canadian\" could have parents coming from an Asian ancestry, etc. People identify themselves with different groups, whether that group is a country of birth (citizenship), parents' ancestry, or religion or belief. The list above shows the diversity in ethnic or cultural groups to which respondents felt they belonged. This diversity, observed across all committees (CHCs and PHACs), is not unexpected since Vancouver residents come from an array of cultures and backgrounds. Question: What is your highest level of education attended or completed? Please tick one of the following. Most respondents (82.3%) had either attended or completed undergraduate and graduate university degrees as their highest level of education (Figure 10), i.e. the majority of respondents were well-educated. Figure 10: Highest level of education attended or completed (N=34) 50 40 30 t o < D SE 20 o i 10 < D < J < D Q . J 0 0_ High school I College I Grad. univ. ! Elementary Trade school Undergrad univ. Other Question: What is your current marital status? Please tick one of the following. Almost half (44.1%) the respondents were married (Figure 11), 26.5% were single (never married), and 20.6% were divorced. Only 1 respondent did not provide his/her marital status. -90-Figure 11: Marital status (N=34; QU=question unanswered) 50 n 40 CD T3 3 0 -\u00C2\u00A3 20 o $100,000 Q U $25,001-$50,000 $75,O00-$100,000 Question: What is your current work/employment status? Please tick one or more of the following. Since respondents could select one or more categories, the percentages in Table 18 add up to over 100%. Just under half the respondents were in full-time employment. About a quarter of respondents volunteered for activities other than for the CHC or PHAC. Twenty-one percent of -91-respondents were retired. Table 18: Work/employment status of respondents Work/employment status % respondents full-time employed 47 volunteer (other than for the committee) 24 retired 21 part-time employed 15 self-employed 12 part-time homemaker 9 student 6 full-time homemaker 3 unemployed 0 Question: If you are employed, what is your profession/occupation? This was an open-ended question in the survey. Respondents generally had professional-type occupations; these included: marketing counsellor alternative healer professional engineer urban planner business owner sales representative supervisor/principal librarian interviewer psychologist teacher research assistant Associate Dean community mental health nurse administrator/general manager public health consultant director of a social service agency This list excludes staff, since it was already known what they do, but it pertains to CHC/PHAC members. By profession/occupation, member respondents (CHC/PHAC) had diverse backgrounds. 4.3 QUESTIONS C O M M O N T O A L L S U R V E Y S These questions were asked on all the questionnaires, regardless of whether respondents were a CHC member, a PHAC member, or staff (N=34). -92-Question: The CHCs/PHACs \"assist\" and \"advise\" the Board in a variety of activities. Please describe what you think \"assist\" and \"advise\" mean. The words \"assist\" and \"advise\" are found in the stated roles and responsibilities of the CHCs and PHACs. Assist Respondents had varied conceptions of \"assist\", more commonly including the following: \u00E2\u0080\u00A2 providing information to the Board on community needs (41.2% of respondents); and \u00E2\u0080\u00A2 helping the Board to carry out its activities, whatever they may be (35.3% of respondents). The concept of \"initiating\" or \"taking action\" was mentioned by 3 respondents (8.8%). Advise Respondents described \"advise\" as making recommendations and suggestions (50%), and providing information or consultation to the Board (50%). One respondent (2.9%) was not sure how they would describe both \"assist\" and \"advise\". Question: Shared governance, not management, is emphasized as the role of the CHC/PHAC. Please describe the difference between governance and management. Governance Although 2 respondents (5.9%) were unsure about how they would describe \"governance\", most (64.7%) referred to \"governance\" as developing policies and guidelines, mainly focusing on a broad vision and framework within which management can work. Some respondents (11.8%) felt that governance also included monitoring management to make sure management operates under specified policies. These descriptions fit the Board's view of governance, as emphasized to the committees at their orientation sessions. The Board defines governance as the \"setting of policies that direct management on health services and the manner in which they are to be provided\". -93-Management Although 1 respondent (2.9%) was unsure about how to describe \"management\", most (61.8%) described \"management\" as the day-to-day operations and the implementation and delivery of policy. These concepts coincide with the Board's view of management, also emphasized to the committees; management was defined as \"the responsibility for carrying out decisions made by the Boards and Committees\", which \"falls to staff\". However, some respondents (23.5%) mentioned the concept of \"control\" by management; yet it was unclear from the descriptions what \"control\" meant, i.e. how much or what type of \"control\" should management have? Question: For the tasks listed, what level of involvement does the CHC/PHAC currently have, and what level should it have? Table 19 below shows the averages of the responses for each task, currently (at the time of the survey) and what the respondents felt they should have had (at the time of the survey). The following scale was used: l=no involvement at all; 2=consultation; 3=partnership; and 4=control. The definitions were presented in the questionnaire. Consultation means the Board consults the CHC/PHAC on decisions, but the ultimate decision making responsibility is the Board's, i.e. the Board may or may not follow the advice of the CHC/PHAC. Partnership means power is redistributed through negotiation between the CHC/PHAC and the Board; the CHC/PHAC and the Board share planning and decision making responsibilities. Control means the CHC/PHAC govern a program or an institution, are in full charge of policy and managerial aspects, and are able to negotiate the conditions under which the Board may change them. -94-Table 19: Respondents' current (at the time of the survey) perceptions and their preference of levels of involvement for various tasks Task . Currently have (c) Eshould have (sh) difference (sh -c) Preparing/revising a health plan for your community/population a2.69 \"3.28 0.59 Establishing health goals and objectives for your community/population a2.66 b3.25 0.59 Setting timetable for action for your committee ' a2.59 \"3.31 0.72 Assessing the health needs of your community /population a2.59 3.16 . 0.57 Representing your community/population 2.52 3.09 0.57 Setting priorities on health issues in your community/population 2.44 3.09 0.65 Providing information and consultation on your community /population to policy makers 2.44 3.03 0.59 Studying your community 's/populations's problems and resources 2.37 2.97 0.60 Representing the Board to your community/population 2.35 2.81 0.46 Responding to your community's/population's requests and recommendations 2.19 3.10 0.91 Involving your community/population in making decisions about health and/or health services 2.09 3.13 1.04 Being consistent with regional objectives 2.04 2.80 0.76 Making policy on health care service delivery in your community/for your population 1.84 2.91 1.07 Ensuring effectiveness of health services, in your community/for your population 1.72 3.03 d1.31 Ensuring efficiency of health services in your community/for your population 1.66 3.00 d1.34 Encouraging individual institutions in your community/from your population to develop planning programs 1.53 2.73 1.20 Creating systems for data collection and analysis for your community/population 1.52 2.56 1.04 Hiring staff to support your committee 1.41 2.52 1.11 Reviewing local program grant applications in your community /for your population 1.40 2.77 d1.37 Allocating funds for health programs and services in your community/for your population 1.33 2.59 1.26 Training staff who are supposed to support your committee 1.31 2.27 0.96 Oversee the management of health services in your community/for your population 1.31 2.53 1.22 Raising revenue for your committee 1.19 1.90 0.71 a = top 4 tasks for which respondents felt the committees currently have the greatest level of involvement b = top 3 tasks for which respondents felt the committees should have d = 3 largest differences between what respondents currently have and think they should have E=at the time of the survey For every task listed, respondents felt the CHCs/PHACs should have had a greater level of involvement/control than they had at the time of the survey. Respondents felt the committees had -95-the highest level of involvement in planning for health for the community/population (seea in the currently have column in Table 19). The tasks for which respondents felt the committees should have had the highest level of involvement were very similar to those they felt the committees had (seeb in the should have column in Table 19), i.e. planning for health, although a higher level of involvement was desired than in actuality. On the other hand, the largest differences observed between the level of involvement respondents felt the committees should have had and actually had were for different types of tasks (seed in difference column of Table 19): \u00E2\u0080\u00A2 reviewing local program grant applications in your community/for your population (1.37 difference) [the committees have since become involved with reviewing proposals for funding under the $5 million Incentive Fund]; \u00E2\u0080\u00A2 ensuring efficiency of health services in your community/for your population (1.34); and \u00E2\u0080\u00A2 ensuring effectiveness of health services in your community/for your population (1.31). These latter 2 tasks are considered more management than governance. However, the role of the CHCs/PHACs involves governance. Thus, a discrepancy exists between the desired and the defined roles (activities) of the committees. In summary, respondents felt that the committees had and should have had a high level of involvement in terms of planning for health (average over 3). Question: Overall, which form of authority do you think the CHC/PHAC should have? Do you have any comments on your response above? The previous questions sought to find out, at the time of the survey, actual and desired levels of involvement for the committees from a list of tasks. This questions seeks an overall desired level of involvement for committees. Respondents were asked to select only one of either consultation, partnership, or control. Table 20 shows the percentages of the respondents who selected each level of involvement: -96-Table 20: Preferred overall level of involvement for CHCs/PHACs Level of Involvement Percentage Consultation 22 Partnership 69 Control 9 Respondents were divided on their perspectives about their preference for the committees' overall level of involvement. Some verbatim comments from respondents included: \"The CHCs can not remain democratic if they do not have some degree of control; yet the CHC can not become a managerial body.\" \"Committee members must be seen as valuable, equal skilled partners and respected [in a partnership relation].\" \"Acknowledge that the Board holds final responsibility, accountability, and authority.\" \"Committee members are not knowledgeable or informed enough to be making decisions.\" \"The committee is not very connected with the V/RHB.\" Question: Describe what you think the overall roles should be for the following stakeholders in health care decision making. Respondents were already asked about the desired level of involvement for the committees; also of interest was a description of the desired roles of the committees, as well as the Community Developers, V /RHB, and M O H , as these parties support the CHCs/PHACs, whether through financial or other means. CHC/PHAC Respondents felt the committee (CHC/PHAC) should be \"the voice of the community\" (35.5%), involved in health planning for the community/identified population (32.4%), and ensuring that delivery takes into account the needs of the community/identified population (26.5%). Some respondents mentioned that the committees should keep in touch with the community/identified -97-population and involve them in the process as well (17.6%). Some respondents (11.8%) felt the CHCs/PHACs did not receive clearly defined roles and tasks, partly because the Board and its staff did not know the answers themselves as the Board was still developing its own roles and structures. Thus, there was no direction nor overall plan for community involvement; there was no framework for seeing the big picture. Two respondents (5.8%) felt the committees were ad hoc without much say; volunteer information was not accepted as equally important nor as valid as the Board or its staff. One respondent (2.9%) suggested that there should be a budget the committees can work with [allocation of resources] and programs or projects that could be initiated and monitored. Community Developers (CDs) Respondents used a variety of action words to describe the role of the CD: support (26.5%); facilitate (20.6%); assist (14.7%); and help (8.8%) and coordinate (8.8%). In particular, a variety of activities for the CDs were desired: \u00E2\u0080\u00A2 provide information to the committee on health issues, goals and objectives (liaison between committee and community/identified population) (23.5%); \u00E2\u0080\u00A2 encourage committee members in their participation and leadership (14.7%); \u00E2\u0080\u00A2 liaise between committee and the Board (14.7%); \u00E2\u0080\u00A2 liaise between committee and service providers (14.7%); \u00E2\u0080\u00A2 spokesperson or advocate for the committee (11.8%); \u00E2\u0080\u00A2 secretarial (arrange meetings, take minutes at meetings) (8.8%); and \u00E2\u0080\u00A2 assigning tasks to and directing committee members (5.9%) vs. should not be directing the committees (5.9%). These descriptions indicate that respondents felt CDs should play a major role in supporting and facilitating the work of the committees. The Board Some respondents (29.4%) felt that the Board should consult with the CHCs/PHACs, and that the -98-input from the committees should be recognized and taken into account when the Board plans and makes decisions. Some respondents felt the Board should also support the committees in representing the community/identified population (17.6%), and that any direction given to the committees should be clear (14.7%). Some felt the CHCs and PHACs were \"too far removed\" from the Board (8.8%), i.e. that \"there must be a more direct forum in which V/RHB members come into contact and hear from [the committee]\". Ministry of Health (MOH) Many respondents felt that the M O H should not play a role in relation to the CHC/PHAC, or that there should be no direct contact between them (41.2%), i.e. if any, the contact should be via the Board (20.6%). However, some respondents felt the M O H should provide the CHC/PHAC with funding and resources (17.6%), and seek input from the CHC/PHAC (14.7%). Three respondents (8.8%) felt the M O H should set guidelines and goals; this corresponds to the what the M O H feels its role should be. The relationship between the M O H and the CHCs/PHACs has always been indirect. Although the Board is mandated by the M O H , neither CHCs nor PHACs have ever been; any authority received by the committees is delegated by the Board. 4.4 CHC-SPECIFIC QUESTIONS The percentages and averages Tor this section on CHC specific questions only takes into account the 21 cases for CHCs (CHC members and the CDs who work with the committees). Question: Rate the clarity (vocabulary, vagueness, scope of involvement) of each role/responsibility. If the role/responsibility is not \"totally clear\" (not a rating of 5), please explain why. A scale of 1 to 5 was used, where 1 meant \"not clear at all\" and 5 meant \"totally clear\". Overall, respondents felt that \"assist and advise\" was not \"totally clear\", and that the terms could be open to -99-many interpretations. Table 21 presents more specific reasons as to why respondents may have felt the roles and responsibilities were not \"totally clear\". None of the comments from respondents referred to a word they had never seen before or did not understand the meaning of. Relatively, respondents felt the responsibilities with regard to community health plans were most clear, and that responsibilities concerning standards and integration of services were least clear. Table 21: Average ratings of clarity of their roles and responsibilities of CHCs Stated Role/Responsibility Average Rating of Clarity Reasons for Lack of Clarity Each CHC will assist and advise the Board in developing a community health plan that specifies and provides for the delivery of health services in the areas of the Region for which the CHC is appointed and to represent to the Board the needs of such residents for current and future health services. 3.94 Some respondents did not understand how the community health plan would be developed or what it should contain. Each CHC will assist and advise the Board in projecting the future needs of residents for health services, in setting priorities and determining budgets of the Board for the delivery of health services in the Region. 3.22 Respondents did not comment on the clarity of the responsibility per se. Rather, lack of clarity resulted from the fact that the CHCs, at the time of the survey, had not been involved in the setting of budgets. Each CHC will assist and advise the Board in developing and implementing community standards for delivery of health services in the Region. 3.28 Respondents felt \"community standards\" was too vague. As well, respondents did not know how, when, or what opportunity they would have for this responsibility. Each CHC will assist and advise the Board in monitoring, evaluating and complying with provincial, regional and community standards. 2.94 Respondents felt \"standards\" was too vague, i.e. where are these standards? As well, respondents did not know how they would be involved with this responsibility. Each CHC will assist and advise the Board in coordinating and integrating health services in the community. 3.17 Respondents did not understand how they would be involved with this responsibility. One respondent felt this was more like a management function than an \"assist and advise\" function. Question: Since you became a CHC member/CD, has the Board identified additional purposes and responsibilities for the CHCs? If yes, what additional purposes/responsibilities were identified? In the CHC statement of roles and responsibilities, the V/RHB could delegate \"additional purposes -100-or responsibilities\" for the CHCs. Respondents were divided on whether or not the Board provided the committees with additional purposes or responsibilities since becoming CHC members/CDs (see Figure 13). Figure 13: Additional purposes since becoming CHC members/CDs (N=21; QU=question unanswered) |28.6J '28.61 |286| sKfiilll y\u00C2\u00A7lil\u00C2\u00BB| - iilllillll ^Biiiij feife^^^ teiiiiiiil QU Yes Not sure No Additional purposes Half the respondents who answered \"yes\" indicated that additional purposes/responsibilities included being a representative of or participating on boards/committees, i.e. CHC Coordinating Committee, Hospital Board(s), and Regional Connections meetings. These responsibilities were not specifically outlined in the CHC statement of roles and responsibilities. The other half of respondents who answered \"yes\" did not indicate what additions were made. Question: How complete is your C H C s community health plan (not a regional health plan)? The lowest rating was a 3 (Figure 14), i.e. respondents felt the community health plans were at least half complete. Forty-eight percent of respondents felt their C H C s plan was complete. However, during the survey period only 2 community health plans were in fact complete (defined in this study as a written document with, at the least, health priorities of the community). Therefore, more respondents felt their C H C s plan was complete than determined using the definition of \"community 30-a c "Thesis/Dissertation"@en . "1998-05"@en . "10.14288/1.0088404"@en . "eng"@en . "Health Care and Epidemiology"@en . "Vancouver : University of British Columbia Library"@en . "University of British Columbia"@en . "For non-commercial purposes only, such as research, private study and education. Additional conditions apply, see Terms of Use https://open.library.ubc.ca/terms_of_use."@en . "Graduate"@en . "Roles and responsibilities of public involvement committees in the Vancouver/Richmond health region : how are things going?"@en . "Text"@en . "http://hdl.handle.net/2429/7890"@en .