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International cancer control congresses : do they make a difference? Sarwal, Kavita 2012

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International Cancer Control Congresses:  Do they make a difference?  by  KAVITA SARWAL  MHA, The University of British Columbia, 2003   A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF  THE REQUIREMENTS FOR THE DEGREE OF    DOCTOR OF PHILOSOPHY  in  THE FACULTY OF GRADUATE STUDIES  (INTERDISCIPLINARY STUDIES)   THE UNIVERSITY OF BRITISH COLUMBIA (VANCOUVER)  OCTOBER 2012  © Kavita Sarwal, 2012        ii  ABSTRACT Statement of the Problem  This study has taken advantage of a “natural experiment,” the holding of International Cancer Control Congresses (ICCC) to conduct research that assesses the value of such undertakings, and examines ways for effectively pursuing positive change in improving policy and practice related to cancer control. Given the importance of this global challenge, this study investigates the question: Do International Cancer Control Congresses influence reported changes in participant behaviors and activities that enhance the development or implementation of population-based cancer control programs and increased collaborations?  Methods of Investigation  The population of interest included all the congress registered participants for two International Cancer Control Congresses—362 individuals at the 3rd ICCC for the first pod of surveys; and 310 participants at ICCC4 for the second pod of surveys. The primary data collection instrument was self-report surveys, surveyed in two pods. Each pod included an on- site survey followed by a follow-up survey a few months later on the same census sample of participants. Research instruments for data collection included surveys, interviews, conference documentation, observations as well as secondary data from WHO publications and appropriate web based publications like country plans and others. The study was organized as a mixed methods research using a triangulation design that allowed a mix of both quantitative and qualitative data in a single study.       iii  Conclusions  The study indicates that most respondents gained professionally in improved understanding of global population based cancer control programs and new insights into cancer control. Through sharing best practices and insights gained at the congress in their jurisdictions, many indicated that the Congress has helped them in their cancer control work, including increased awareness for establishing collaborations and for setting up surveillance systems; also highlighting for them the importance of expediting national cancer/integrated non-communicable disease plans. Increasing their networks, participants continue experiencing a rise in interest and involvement in cancer control. The Latin American Region research reveals that it takes time before initiatives emerge and can be attributed to ICCC. In revealing which finds are inconclusive, this study offers opportunities for cohort longitudinal investigations.        iv  PREFACE  This thesis is submitted in partial fulfillment of the requirements for the degree Doctor of Philosophy in global health with a focus on cancer control. It contains work done since 2009. The thesis has been based on research conducted by the author primarily through self- administered surveys.   As my research involved human subjects I had obtained the approval from the Behavior Research Ethics Board for the University of British Columbia. I received a certificate of approval H10-01771 to conduct the surveys.  Subsequently in 2011, I received an amendment approval on the current UBC BREB approval H10-01771 for conducting the remainder surveys.       v  TABLE OF CONTENTS ABSTRACT ................................................................................................................................... ii PREFACE ...................................................................................................................................... iv TABLE OF CONTENTS ............................................................................................................... v LIST OF TABLES ......................................................................................................................... xi LIST OF FIGURES ..................................................................................................................... xiii LIST OF SYMBOLS AND ABBREVIATIONS ......................................................................... xv GLOSSARY ................................................................................................................................ xvi ACKNOWLEDGEMENTS .......................................................................................................... xx DEDICATION ............................................................................................................................ xxii CHAPTER 1: INTRODUCTION ................................................................................................... 1 1.1 Overview of Topic ................................................................................................................. 1 1.2 The ICCC Initiative ............................................................................................................... 2 1.3 Current Global Environment for Non-Communicable Diseases/Cancer Control ................. 7 1.4 Research Objective .............................................................................................................. 12 1.5 Research Question ............................................................................................................... 14 1.6 Hypotheses .......................................................................................................................... 14 1.7 Significance of Research ..................................................................................................... 16       vi  1.7.1 The Rationale ............................................................................................................... 18 1.7.2 The Gap ....................................................................................................................... 19 1.8 Organization of the Dissertation .......................................................................................... 21 CHAPTER 2: LITERATURE REVIEW ...................................................................................... 23 2.1 Capacity Building ................................................................................................................ 24 2.1.1 Community of Practice (CoP) ..................................................................................... 34 2.2 Collaboration ....................................................................................................................... 36 2.2.1 Examples of Effective Collaborations ......................................................................... 40 2.3 Knowledge Translation ....................................................................................................... 46 2.3.1 Knowledge Utilization and Approaches to Measure Knowledge................................ 52 2.4 Global Health ....................................................................................................................... 55 2.5 Framework Convention on Tobacco Control ...................................................................... 59 2.6 Approaches to Evaluating Contributions to Strengthening Capacity .................................. 62 2.6.1 Evaluation Methodology ............................................................................................. 67 2.6.2 Evaluation Approach: Logic Models ........................................................................... 70 CHAPTER 3: METHODOLOGY ................................................................................................ 74 3.1 Restatement of Purpose of Study and Unit of Analysis ...................................................... 74 3.2 Research Design .................................................................................................................. 75       vii  3.3 Methods ............................................................................................................................... 78 3.3.1 Study Design ................................................................................................................ 79 3.4 Data Collection .................................................................................................................... 85 3.4.1 Data Collection Sources, Instruments and Procedures ................................................ 86 3.4.2 Sampling ...................................................................................................................... 88 3.4.3 Operationalization of Variables ................................................................................... 95 3.5 Positionality and Ethics ....................................................................................................... 99 3.6 Data Analysis ..................................................................................................................... 101 3.6.1 Measures or Indicators ............................................................................................... 104 3.7 Summary ............................................................................................................................ 106 CHAPTER 4: RESULTS ............................................................................................................ 107 4.1 Analysis Background ......................................................................................................... 108 4.2 Preliminary Analysis ......................................................................................................... 113 4.3 ICCC Influences Changes in Participant Behaviour and Activities .................................. 131 4.3.1 Univariate and Bivariate Analysis ............................................................................. 131 4.3.2 Supporting Qualitative Data ...................................................................................... 145 4.4 ICCC Influences Development/Implementation of NCCP ............................................... 152 4.4.1 Univariate and Bivariate Analysis ............................................................................. 153       viii  4.4.2 Supporting Qualitative Data ...................................................................................... 166 4.5 ICCC Facilitates Increase in Partnerships and Collaborations .......................................... 172 4.5.1 Univariate and Bivariate Analysis ............................................................................. 172 4.5.2 Supporting Qualitative Data ...................................................................................... 186 4.5 Summary ............................................................................................................................ 193 CHAPTER 5: DISCUSSION AND CONCLUSION ................................................................. 195 5.1 Findings ............................................................................................................................. 195 5.1.1 Summary of Current Findings ................................................................................... 196 5.1.2. Integration of Findings ............................................................................................. 210 5.2 Strengths and Limitations of Study ................................................................................... 242 5.2.1 Study Strengths .......................................................................................................... 242 5.2.2 Study Limitations ...................................................................................................... 248 5.3 Implication of Findings ..................................................................................................... 256 5.3.1 Additional Considerations for Future Congresses ..................................................... 261 5.3.2 Considerations for Future Studies Relevant to Thesis Topic .................................... 265 5.4 Conclusion ......................................................................................................................... 292 BIBLIOGRAPHY ...................................................................................................................... 296 Appendix A: ICCC3 and ICCC4 Survey Reports……….……………………………………..318       ix  A.1 ICCC3 Participant Survey Analysis Report, March 2010……………………...319 A.2 ICCC3 Follow-Up Survey Analysis Report, January 2011…………………….351 A.3 ICCC4 Participant Survey Analysis Report, January 2012…………………….391 A.4 ICCC4 Follow-Up Survey Analysis Report, March 2012……………………...451 Appendix B : ICCC3 and ICCC4 Survey Questionnaires.……………………………………..520 B.1 ICCC3 Participant Survey Questionnaire, November 2009……………………521 B.2 ICCC3 Follow-Up Survey Questionnaire, August 2010……………………….526 B.3 ICCC4 Participant Survey Questionnaire, November 2011……………………534 B.4 ICCC4 Follow-Up Survey Questionnaire, January 2012………………………540 Appendix C : ICCC3and ICCC4 Interview Questionnaires……………………………………548 C.1 ICCC3 Interview Questionnaire, November 2009……………………………..549 C.2 ICCC4 Interview Questionnaire, November 2011……………………………..550 Appendix D: Table of Activities…….……………………………………….…………………553 D.1 Table of Activities Planned or Performed by ICCC3 and ICCC4 Participants...554 Appendix E: Model……………………..………………………………………………………568  E.1 Logic Model for ICCC…………………………………………………………569 Appendix F: Tabulation………………………….……………………………………………..571 F.1 Tabulation of Participant Reported ICCC3 Follow-Up Activities……………..572  F.2 Tabulation of Participant Reported ICCC4 Follow-Up Activities……………..574 Appendix G: Country Information …………………………………………………....……….577 G.1 Table of NCCP and Cancer Registry Information for Participating Countries...578 Appendix H: Elements Missing..……………………………………………………………….581       x  H.1 Table of Missing Elements……………………………………………………..582        xi  LIST OF TABLES Table 2.1 Six approaches to build capacity in cancer/NCD control………………….....25  Table 2.2 Frameworks for evaluating effectiveness of population-based approaches for capacity building………………………………………………………….…..32  Table 2.3 Frameworks for design and evaluation of complex KT intervention………...50 Table 2.4 Few approaches in measuring knowledge use………………………………..54 Table 3.1 Listing of variables and confounders………………………………………. ..95 Table 3.2 Example to operationalize variables using the questionnaire of ICCC4…......97 Table 4.1 Primary sources for analysis……………………………………………….. 108 Table 4.2 Quick glance at comparative findings from the four surveys ……………... 115 Table 4.3 Comparative success of the congresses as rated by respondents………….. 120 Table 4.4 Comparing follow-up survey responses of ICCC3 and ICCC4……………. 121 Table 4.5 Comparison of ICCC3 with ICCC3 follow-up survey…………………….. 124 Table 4.6 Comparison of ICCC4 with ICCC4 follow-up survey…………………….. 128 Table 4.7 Association between satisfaction with ICCC4 and direct follow-up plans… 133  Table 4.8 ICCC4 associations with change in behavior and activities of participants.. 133 Table 4.9 ICCC3 associations with change in behavior and activities of participants.. 139 Table 4.10 Association of level of resources with participant interest or involvement... 143 Table 4.11 ICCC3 associations with development or implementation of NCCP……… 154 Table 4.12 ICCC3 success in specific objectives……………………………………… 157 Table 4.13 ICCC4 associations with development or implementation of NCCP……… 158 Table 4.14 ICCC3 associations with collaborations, partnerships or networks……….. 173       xii  Table 4.15 ICCC4 associations with collaborations, partnerships or networks……….. 177 Table 4.16 Association of level of country resources with participant collaborations… 184 Table 5.1 Congress performance measures, data sources, methods of measure……… 200 Table 5.2 Estimated status of congress outcomes at local and global level…………... 235 Table 5.3 High-level cost-benefit analysis of congress and alternatives foregone…… 239                  xiii  LIST OF FIGURES Figure 1.1 Conceptual schema…………………………………………………………….5 Figure 2.1 Conner’s conceptual model for research utilization evaluation……………...53 Figure 3.1 Study’s conceptual framework……………………………………………….76 Figure 3.2 Concurrent triangulation strategy…………………………………………….78 Figure 3.3 Study design………………………………………………………………... ..80 Figure 3.4 Triangulation design: validating quantitative data model................................83 Figure 3.5 Diagrammatic representation of relationship between variables…………... 101 Figure 4.1 NVivo nodes and sub-nodes……………………………………………….. 111 Figure 4.2 NVivo nodes and memos…………………………………………………... 113 Figure 4.3 Specific activity plan – ICCC4……………………………………………...137 Figure 4.4 Activities done (utilization of gains) – ICCC4 follow-up…………………..138 Figure 4.5 Specific activities planned to utilize congress gains – ICCC3……………...141 Figure 4.6 Activities done (utilization of gains) – ICCC3 follow-up…………………..141 Figure 4.7 Professional gains from the congress – ICCC3……………………………..156 Figure 4.8 ICCC3 helpfulness in cancer control/NCD work…………………………...158 Figure 4.9 ICCC4 helpfulness in supporting NCCP…………………………………....164        Figure 4.10 ICCC4 helpfulness in cancer control work………………………………….165 Figure 4.11 Helpfulness of ICCC4 in cancer control work – ICCC4 follow-up………...165 Figure 4.12 Attending ICCC4 helpful – ICCC4 follow-up……………………………...166 Figure 4.13 Professional gains from attending the congress – ICCC3 follow-up……….176       Figure 4.14 Demonstrated collaboration – ICCC3 follow-up…………………………...177       xiv  Figure 4.15 Community of practice (COP) a goal – ICCC4……………………………. 183 Figure 4.16 Increase in collaborations after ICCC4 – ICCC4 follow-up……………….. 183 Figure 5.1 Logic model impact chain: inputs to impact1……………………………… 197 Figure 5.2 ICCC population-based cancer control…………………………………….. 261 Figure 5.3 ICCC equation……………………………………………………………... 262        xv  LIST OF SYMBOLS AND ABBREVIATIONS $ US Dollar K Thousand M Million < Less than =  Equal to          xvi  GLOSSARY ACS American Cancer Society APJCP Asia Pacific Journal of Cancer Prevention BCHLA British Columbia Healthy Living Alliance CARMEN Collaborative Action for Risk Factor Prevention and Effective Management of NCD’s CB  Capacity Building CBPR Community based participatory research CC Cancer Control CCBS Community capacity building strategy CCC Comprehensive cancer control CCS Canadian Cancer Society CDC Centre for Disease Control CIHR Canadian Institute for Health Research CLASP Coalition Linking Science and Action for Prevention CoP Community(ies) of Practice CPAC Canadian Partnership Against Cancer CPG Clinical practice guidelines DALY Disability adjusted life years EPAAC European Partnership for Action Against Cancer EBI Evidence based initiatives       xvii  EVIPNet Evidence Informed Policy Networks FAO Food and Agriculture Organization FCTC Framework Convention on Tobacco Control GDP Gross Domestic Product HIV/AIDS Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome IAEA International Atomic Energy Agency IAEA-PACT International Atomic Energy Agency – Programme of Action for Cancer Therapy IARC International Agency for Research in Cancer ICCC International Cancer Control Congress ICCC1 First International Cancer Control Congress ICCC2 Second International Cancer Control Congress ICCC3 Third International Cancer Control Congress ICCC4 Fourth International Cancer Control Congress ICCC5 Fifth International Cancer Control Congress INCA National Cancer Institute of Brazil INCTR International Network for Cancer Treatment and Research KT Knowledge Translation  LMC Low and middle income countries LMIC Low and middle income countries MCC Multidisciplinary cancer congresses MDG Millennium Development Goals       xviii  MOU Memorandum of Understanding MPOWER Monitor tobacco, Protect from second hand smoke, Offer help, Warn dangers, Enforce bans, Raise taxes on tobacco NCCP National Cancer Control Program/Plan NCD Non-communicable disease NGO Non-governmental organization NVivo9 Qualitative research software P.L.A.N.E.T Cancer Control Plan Link Act Network with Evidence Based PACT Programme of Action for Cancer Therapy PMDS PACT Model Demonstration Sites RE-AIM  Reach Efficacy Adoption Implementation Maintenance RINC Network of National Cancer Institute’s in Latin America SPSS Statistical Package for Social Sciences TB Tuberculosis TTC Transnational Tobacco Company UICC International Union Against Cancer UN United Nations UNASUR Union of South American Nations UN HLM United Nations High Level Meeting US United States of America USD United States Dollar VUCCnet Virtual University for Cancer Control        xix  WCD World Cancer Declaration WCRF/AICR World Cancer Research Fund /American Institute for Cancer Research WHA World Health Assembly WHO World Health Organization WHO PEN World Health Organization Package of Essential NCD’s WPRO Western Pacific Regional Office of the WHO WTO World Trade Organization 3C Coordination Cooperation and Close Collaboration 3RD ICCC (See ICCC3)  4TH ICCC (See ICCC4)         xx  ACKNOWLEDGEMENTS  This thesis would not have been possible without the support of a number of individuals organizing the International Cancer Control Congresses and their contribution is acknowledged. In particular, my enduring gratitude to Dr. Simon B. Sutcliffe, Chair of the Canadian Partnership against Cancer for his ongoing belief in me and for his unconditional support and guidance over the years. Thanks are also extended to all the congress hosts, committee members and participants at the 3rd and 4th International Cancer Control Congresses. Especially, to the participants who responded to the surveys. Due to their participation we have collected valuable information to assess the contributions of the International Cancer Control Congresses and guide future planning.  I am deeply appreciative of my supervisors, Dr. Jerry M. Spiegel and Dr. Mark Elwood who have provided me tremendous insight and guidance. I offer my special thanks and gratitude to my advisory committee, Dr. Jerry M. Spiegel, Dr. Carolyn Gotay, Dr. Simon B. Sutcliffe, and Dr. Mark Elwood who have provided me with invaluable supervision, great confidence, guidance, amazing inspiration and courage. Their trust and belief in my abilities is what has enabled me to continue work in this field.      A special thank you to my extremely helpful fellow students especially Juliette, Maria, Christine and many others including my sister who have supported me tirelessly, provided me with ongoing honest feedback and inspired me to continue the journey.        xxi   Most important of all, I could not have done this without the unwavering support of my family. My husband’s motivating talks and belief in me kept me focused and balanced. My sons, Gautamn and Dhiren provided me unparalleled encouragement and support. They never once complained when I stopped participating in the fun-filled activities we love doing as a family, especially golf and downhill skiing. My parents’ blessings and their strong encouragement and support even though across the oceans kept me going.             xxii  DEDICATION   To my family for their unconditional support       1  CHAPTER 1: INTRODUCTION 1.1 Overview of Topic Non-communicable diseases including cancer are one of the most serious health challenges the world faces today. It is even more serious as the population is growing rapidly and people are living longer. By 2030, deaths from non-communicable diseases (NCDs) are expected to account for 69% of all global deaths with cancer deaths increasing to 11.8 million from 7.4 million in 2008 (1). Cancer/NCDs present a global challenge that requires a coordinated and collective global response. This universal problem in a world of complexity with international dimensions calls for strengthening capacity at national, regional and global levels that will be adequate to meet the increasing challenge.  The International Cancer Control Congresses (ICCCs) provide a unique "natural experiment" opportunity to assess the value of a one way that a significant global health challenge can be approached to improve policy and practice related to cancer control. In 2003- 04, it was apparent that a number of countries were developing national cancer control strategies and needed a forum to discuss common challenges, and share successes and learning. The ICCCs were subsequently launched in 2005 as a neutral forum to encourage knowledge exchange, facilitate creation of a global community of practice to share information and expertise relevant to developed and developing nations, and assist in improving national cancer control by placing it on the world health agenda. The vision of ICCCs is to “create a forum to share knowledge, experiences, strategies, approaches, tactics and best practices that can enhance and accelerate the       2  implementation of effective population-based national cancer control strategies and the evaluation of cancer control initiatives” (2). The focus of this dissertation is to explore the impact of the Congresses in stimulating cancer control awareness, influencing development of cancer control programs, promotion of collaborations and alliances, providing an opportunity for building capacity, fostering knowledge translation, and supporting the enhancement of National Cancer Control Plans (NCCPs). 1.2 The ICCC Initiative  A dictionary definition would depict a congress as a group of people united in a relationship and having some interest, activity, or purpose in common (3). Congresses in the context of this study are forums where participants interested in the cancer control agenda gather to share knowledge, experiences, approaches and best practices that can enhance and accelerate the implementation of sustainable population-based national cancer control strategies and more broadly non-communicable disease (NCD) agendas. It is observed that some important countries may be absent from debates while others are over-represented in these forums, and that cultural comparisons and specificities do not generally get investigated in these discussions systematically (3).   This study uses ICCCs as an example to determine if and how congresses contribute to making a difference, if they are of value in effecting short, medium or long term changes in comprehensive cancer control (CCC), and whether they impact comprehensive cancer control planning and implementation locally, regionally and globally. Using the logic model as an approach to guide analysis, this study comprehensively describes the components of the       3  Congresses. It examines why and how Congresses are being conducted as well as their expected outcomes. Over time, the Congresses’ objectives have evolved to promote collaboration1 among international cancer control organizations, promote progress towards establishment of effective cancer control outcomes, ensure participation and engagement between developing and developed countries, foster relationships (such as to share wide and varying experiences to promote interdisciplinary and cross-sectoral collaboration), and build on and synergize ongoing national/regional cancer control work (2, 4). The ICCC in effect strives to promote a global community of practice through extensive dialogue and participation between countries and societies with widely different experience in cancer control, and to build on activities being undertaken by governments, non-governmental organizations (NGOs) and international organizations to make sustainable cancer control a key global priority (2, 5). The International Cancer Control Congress Association, which organizes the ICCCs, does not exist as an organization with a mandate apart from the function of organizing congresses as a vehicle for promoting global cancer control discussions. The ICCCs thus are to provide a forum where broad constituencies of global stakeholders involved in cancer control have an opportunity to work together further and learn from each other. The Congresses are planned in collaboration with the World Health Organization (WHO), international and national non-governmental organizations (NGOs), UN and non-UN agencies including the International Union Against Cancer (UICC), the International Atomic Energy Agency - Programme of Action                                                  1 The constructs collaboration, community of practice, knowledge transfer, capacity building have been examined further in the text.        4  for Cancer Therapy (IAEA-PACT), International Network for Cancer Treatment and Research (INCTR) and the International Agency for Research on Cancer (IARC). This collaboration is realized through the establishment of international steering and scientific committees, as well as inviting speakers, plenary and workshop chairs to participate in ICCCs. The Congresses foster engagement with low and middle income countries (LMICs) and high income countries through involvement of diverse individuals in the Congress committees, session leaders, workshop leaders, plenary speakers, abstract selection, and sponsorships. Participants from LMICs and high income countries encompass a wide array of individuals: policy makers, decision makers, volunteers, researchers, health care officials, patients and advocates.  The ICCCs intent is international collaboration—bringing together a broad international constituency to share strategies, experiences, tactics and best practices to encourage the development or implementation of population-based cancer control. The Congress is one of the facilitating bodies that exist to contribute to enhancing changes in cancer control activities in participant jurisdictions: for example, in prevention, research, surveillance, palliative, end-of-life and other areas. This intended increase of targeted activities is pursued to ultimately produce beneficial impacts on national cancer incidence, prevalence, and mortality and morbidity rates. Every two years, this Congress sets out to gather leading researchers, policy makers, and others in cancer control to share knowledge and learn what works and what does not, to enable implementation of effective and sustainable population-based national cancer control strategies in different resource settings. Each Congress attempts to build upon the previous one to promote collaboration, establish population-based cancer control strategies, provide a dynamic       5  opportunity for a broad constituency of global stakeholders involved in cancer control to work together and learn from one another, strengthen alliances, and allow concerted efforts to address risk factors for cancer/non communicable diseases and a more integrated, evidence based global response to cancer prevention and control.  The direct outcomes of the Congress include completing Congress logistics and holding the Congress as planned; fostering relationships through dialogue, alliances and networking; stimulating awareness to new strategies and insights; and participants gaining a renewed sense of purpose. These basic functions are conducted so as to “enhance and accelerate the implementation of sustainable population-based national cancer control strategies,” as explained above and as illustrated by the conceptual schema (Figure 1.1) that is introduced below and will be further elaborated upon in this study.  Figure 1.1: Conceptual schema Cancer Disease Burden Efforts to stimulate more effective actions Other influences ICCCs Collaboration/ Partnerships Activities & Behavior NCCP + + + Prevention     Early Detection/     Diagnosis/    Supportive Care     Palliation                    Screening          Treatment                + ++ Implementation Initiatives IMPACT + +        6  In brief, the schema above provides a broad model of how congresses can affect cancer control activities so as to influence the burden of cancer. It explains how ICCC encourages action at all levels by influencing changes in (a) participant activities and behaviour, including their role in enhancing population-based cancer control, (b) establishing an appropriate agenda promoting collaborations and partnerships, and (c) raising awareness of participants to the importance of developing, implementing or strengthening national cancer control programs. This awareness contributes to stimulating efforts undertaken to address cancer along the cancer control continuum. Resulting strategies and initiatives implemented are expected to impact the burden of cancer.  The indirect outcomes that are anticipated include the Congress creating a platform for knowledge transfer, an increased understanding amongst participants on how to address common and unique challenges in cancer control, an increased global knowledge about population based cancer control, and a greater alignment of the Congress to participant needs and increased broad- sectoral participation with each passing Congress. Lastly, the long-term expected outcomes include: an increased global outreach and collaboration, knowledge dissemination, establishment of strategic alliances, commencement of pilot projects, and initiation of mechanisms to help countries develop and implement cancer control action plans or programs and gain a greater understanding of the importance of addressing common and unique challenges in cancer control (2, 5, 6).        7  1.3 Current Global Environment for Non-Communicable Diseases/Cancer Control Non-communicable diseases (NCDs) in the global burden of disease equation are clearly a major health burden for high income countries and are on the increase in LMICs. They are responsible for about 63% of global deaths—36 million of 57 million global deaths (7, 8). NCDs are known to affect women and men nearly equally. At one time only the burden of the developed nations, NCDs are now fast becoming a burden of the LMICs due to demographic transitions and lifestyle changes in populations. The burden of diseases, specifically chronic NCD diseases (cardiovascular disease, cancer, diabetes and acute respiratory diseases), is the leading cause of death globally. It is now high in LMICs and predictions are NCDs will continue to increase with the aging of populations, urbanization, and globalization of risk factors (7, 8). Thus, experiences gained from planning and implementing prevention programs in developed countries can help developing countries in addressing the growing NCD burden (9, 10).  The four most predominant NCDs (cardiovascular disease (CVD), cancer, acute respiratory disease, and diabetes) dominate outlay of resources in high-income countries and are often not tackled in LMICs even though these countries contribute 80% of the total global chronic disease deaths (8, 11-16). All of these diseases have roots in unhealthy lifestyles, inadequate physical activity, tobacco, excessive use of alcohol, and psychosocial stress (8, 17, 18) that are reinforced by facilitating societal structures and interests promoting these patterns. To a considerable extent, NCDs are preventable through effective interventions that address the shared risk factors particularly in an era of increased globalization. The World Health       8  Organization (WHO) estimates that 40% of cancers and three quarters of cardiovascular diseases, stroke and diabetes could be prevented if these major risk factors were lessened (8). NCDs are the principal causes of death world-wide, killing more people than all other causes combined. Globally, health systems are bursting at their seams due to the increasing prevalence of chronic conditions like diabetes, heart disease, asthma and others. Countries are developing innovative solutions to address this dilemma, or re-promoting some that have been tried before. Awareness generated from the chronic diseases pandemic resulted in hosting of the first UN General Assembly on Non-Communicable Diseases in 2011 (12) where the WHO proposed cost-effective, feasible, and evidence-based ‘best buy’ interventions to address chronic diseases at a population level as WHO predicts a cumulative loss in global economic output due to NCDs of 5% of GDP by 2030 (19). Realization has set in amongst governments of the world that they need to have a collective response, and introduce stronger legislation and regulation to make a substantial impact (7).  Twenty-three LMICs account for 80% of NCD related deaths (16). Evidence shows risks for NCDs (CVD and certain cancers) are higher in individuals in lower socioeconomic levels; thus, when applying prevention strategies, underlying health inequalities influenced by education, income, housing, environment, social networks and transportation must be considered in order to develop strategies that reduce overall population risk (20-22). In LMICs, 47% of the deaths are in people less than 70 years of age. Currently in these countries, cost effective interventions to counteract tobacco and overweight risk factors are few, and surveillance and overall capacity for prevention and control of NCDs has not been sufficient to reduce the risk       9  factors(16). Awareness is also being raised in LMICs on the importance of population health, described by BC Healthy Living as “health of the population as measured by health status indicators and influenced by social, economic and physical environments, personal health practices, individual capacity and coping skills, human biology, early childhood development, and health services” (23).  Regarding a specific disease, cancer, some risk factors for cancer are modifiable, and others are not. Factors like radiation, food contaminants, and occupational environmental exposures may be most adequately addressed by systemic change, while others like use of tobacco or physical activity also require individual behaviour changes (24). Occupational exposures, for example, require individuals to wear protective clothing and follow safety procedures. In most cases, both individual and systemic/structural approaches are needed. It is recognized that individual and system influences exist for both prevention and primordial factors, and that efforts should be made to address them. Cancer incidence has been increasing in LMICs due to lifestyle changes, environmental exposures, increased life expectancy, population growth, infectious diseases (such as cervical cancer), and a lack of a primary care system for prevention and  screening. With only 5% of global resources for cancer being spent in developing countries, cancer control—especially prevention and detection—is not well established. Palliative care too is rarely available in most LMICs (22). There is plenty of evidence that focus on both primary and primordial prevention is needed to manage preventable cancers before the disease manifests. At least 40% of cancers are preventable as they are attributable to risk factors that can be controlled like: tobacco use, alcohol consumption,       10  unhealthy diets, asbestos and other occupational exposures, environmental pollution, radiation and other factors (7). Exchange of insights at the Congress indicates countries are slowly beginning to recognize this need for upstream prevention to mitigate the need for sophisticated costly interventions downstream. However, this revelation is not happening fast enough. Taking the example of Asia, a continent with 60% of the world population, it had a very high burden of cancer in 2009. Asia has 46% of new cancer cases world-wide, while being challenged by inadequate funding allocation. Globally, it is predicted that by 2020, approximately 60-70% of all new cancer cases will occur in LMICs (22, 22, 24-30). However, about 70% of cancers in developing countries are detected too late for curative treatment (25).   In 2008, the total economic impact of disability adjusted life years (DALYs) lost from cancer worldwide was $895 billion, representing 1.5% of world’s GDP, 19% higher than the economic burden CVD, and seen as the single largest drain on global economy (31). Close to 43% of cancer deaths are due to use of tobacco, unhealthy diets, alcohol consumption, physical inactivity, and infections with low income groups as the ones most exposed to most modifiable risk factors (32).   With the growing burden of cancer, the World Health Organization (WHO) urged countries to address cancer through formulating comprehensive cancer control programs or strategies. Comprehensive Cancer Control in a given country is “an integrated & coordinated approach to reducing cancer incidence, morbidity, & mortality across the cancer control continuum from primary prevention to end-of-life care” (33). A National Cancer Control Programme is “a public health program designed to reduce the number of cancer cases and       11  deaths, and improve the quality of life of cancer patients through the systematic and equitable implementation of evidence-based strategies for prevention, early detection, diagnosis, treatment and palliation, making the best use of available resources”(25).   WHO estimates that cancer is responsible for about 13% of the total deaths that occur each year, far exceeding the combined deaths from the three major infectious diseases (TB, HIV and malaria). WHO also estimates that if present rates remain unchanged, new cancer cases will nearly double by 2030—12.7 million cases in 2008 to 21.4 million cases by 2030 (7). Between 2010 and 2020 WHO has projected a 15% global increase in NCD deaths and over a 20% increase in Africa, Eastern Mediterranean and Southeast Asia (8). Given the challenges being faced globally in cancer control, it is imperative that cancer control professionals work together to halt these premature deaths worldwide. No less than 35% of cancers are due to modifiable risk factors like tobacco, alcohol, poor nutrition, obesity, and infections and, thus, are preventable. To strengthen cancer prevention globally, an integrated approach to preventing other chronic NCDs (cardiovascular disease, stroke, diabetes, respiratory diseases) is needed as they all share major underlying risk factors stated earlier (7).  A major step was taken with the September 2011 UN NCD Summit, which ended with a political declaration by the heads of governments for a coordinated global response to the prevention and control of NCDs. Governments committed to multi-sectoral national and international policies to control NCDs, address risk factors through international agreements like WHO’s Framework Convention on Tobacco Control (FCTC), Global Strategy on Diet Physical Activity and Health and other existing agreements. They also agreed to make prevention a       12  cornerstone, and improve access to vaccines and palliative care. However, the declaration lacks concrete targets, indicators, actions and interventions (34). The hope is that the NCD summit, which was somewhat similar to the 2001 HIV summit, will be the turning point in governments’ thinking. 1.4 Research Objective The purpose of this study is to determine whether ICCCs influence changes in participant behaviour and activity that enhance the development or implementation of population-based cancer control programs and increased collaborations. The proposed study falls within the realm of health services research and health program evaluation as it will assess the degree to which an intervention, like the Congress, achieves its objective of collaboration, networking and exchange of insights and solutions to raise the level of cancer control activity in participant countries. Also, it will explore the complex factors that underlie the enhancement of partnerships and development of population-based cancer control programs; contribute to the impact of knowledge dissemination via congresses; analyze the cancer control factors influenced; and examine a comprehensive set of variables involving cancer control practices, programs and policies. It is fundamentally a social scientific inquiry designed to gain better understanding of certain aspects of congresses and their impact on cancer control policy and resources (35). However, the study has a distinct interdisciplinary character in that it examines the strengthening of social, technical and organizational capabilities of the people involved in addressing a major global health challenge, such as cancer. It specifically highlights the efforts being made to strengthen capacity by raising awareness and shifting the focus of the Congress participants       13  towards the role of the common social determinants of health2, risk factors, primary prevention and promotion of knowledge exchange to effect and synergize existing efforts on evidence-based practice change in cancer control (36, 37).  One unavoidable aspect of congresses is costs, setting the context for why examination of the processes used to produce beneficial outcomes is so relevant. It has been observed that the financial impact can be very high for both organizers and participants. Reviewing total conference costs or cost per participant for ICCC confirms it. For example, the ICCC1 (2005) in Vancouver cost $456K ($1270/person), ICCC2 (2007) in Rio de Janiero cost $891K ($1375/person), ICCC3 (2009) in Cernobbio cost $1.3M ($3562/person), and the ICCC4 (2011) in Seoul cost $457K ($1474/person). The opportunity cost of congresses is yet to be determined. Opportunity costs refer to alternative activities that have been foregone by hosting the congress. A discussion with Congress hosts and organizers confirms there are no cost-measurable benefits they can affirm of hosting congresses. Assessing opportunity costs is not about determining if resources have been wasted, but rather about having resources been optimally utilized. Though the nature of inputs, outputs and outcomes precludes a formal cost- effectiveness analysis, the investigator has considered exploring the opportunity cost of hosting the congress using a high- level cost-benefit analysis. The focus of this study is to explore the degree to which the ICCCs stimulate thought and action to enhance population-based cancer control, develop partnerships, and promote                                                  2 Social determinants of health most commonly include gender, income, ethnicity, occupation, education and others (280).        14  opportunity for collaborative action and engaged dialogue and/or relationships. The investigator is fundamentally interested in ascertaining whether congresses promote knowledge transfer, sharing of best practices and insights, and influence development of communities of practice, which are activities rooted in the interests, skills and willingness of people to share, collaborate and achieves commonly-held goals. With the knowledge gained through such enquiry, it can then be possible to consider similar applications in related fields as well as more comprehensive analysis of longer term impacts. 1.5 Research Question  The intent of this research is to examine the fundamental question: Do International Cancer Control Congresses influence changes in participant activities and behaviour3 that enhance the development or implementation of population-based cancer control programs and increased collaborations?  1.6 Hypotheses Hypothesis #1-Attending the ICCC influences changes in behaviour and activities relating to cancer control activities of participating individuals.                                                  3 In this study activities and behaviours have both been considered. The assumption here is that some activities may be a result of behaviour change; some may occur without a behaviour change; and, maybe not all behaviour changes generate activities.        15  Hypothesis # 2-Attending the ICCC leads to participants’ influencing changes in policy and governance that aid the development or implementation of population-based cancer control programs in their countries/regions. Hypothesis # 3-Attending the ICCC facilitates an increase in partnerships and collaborations.   The secondary hypotheses tested as part of the research were (i) whether attending ICCC led to increased relationship building, including establishment of new communities of practice, and (ii) whether ICCC provided a platform of knowledge transfer for cancer control.  Through assessment of the views/attitudes of ICCC participants, the study will determine whether attending the Congress contributed to the development of national cancer control plans, increased changes in participant activities, and increased collaborations and partnerships. As described before, the study propositions infer that participation in ICCCs is associated with participants being more engaged, increased collaborations, partnerships and relationship building including establishment of communities of practice; and, participants influencing changes in population-based cancer control governance and policies in their countries following the Congress. Involvement of the participants is recognized as an intermediate step to achieving impact and effecting change in cancer control.  The study frames the explanatory variable as “participation at ICCC” and the outcome variables as subsequent involvement in (a) development of collaboration/partnerships/networking, and (b) post Congress development/enhancement/implementation of NCCP or cancer policies, as well as (c) changes in participant activity and behaviour, knowledge transfer and dissemination. The investigator       16  performed a detailed analysis to establish whether attending the Congress made a difference to the participants.  The logic that underlies the above proposed relationship is relational association/cause- and-effect/direct relationship plus inductive reasoning, as the conclusion reached will be evidence–based (i.e., the conclusion will be supported by the evidence). As described by Singleton and Straits, “induction moves from specific instances to general principles, a bottom up process that moves from specific observations to empirical generalizations” (38). Likewise, the researcher sees a parallel in this study where in addition to conducting surveys, data will be gathered to demonstrate the development or strengthening of relationships among Congress participants originating from over 40 countries with varying GDPs. These are intermediate variables of consequence that the researcher wishes to examine in the context of what could ultimately contribute to achieving impact; recognizing this is a step beyond the study. In other words, this study provides only a partial perspective on assessing the full benefit of the ICCCs. Singleton and Straits suggest the study inference will be strengthened with this increasing diversity of participants at the Congress (38). Concepts for the study are collaboration, community of practice, population-based cancer control programs, activities and behaviours.  1.7 Significance of Research   The burden of cancer touches people all over the world (39). Cancer continues to remain as one of the leading causes of morbidity and mortality worldwide. There have been many predictions for 2020 and beyond, stating that the number of new cases of cancer in the world are expected to increase manifold to more than 15 million, with deaths increasing to greater than 12       17  million (40). In addition, most of the burden of cancer incidence, morbidity, and mortality will occur in the developing world (40). A 2011 cancer statistics publication by Cancer Research UK that derives data from the International Agency for Research on Cancer GLOBOCAN database (2008), the World Health Organization Global Health Observatory and the United Nations World Population Prospects report estimated that 60% (7.56 M) of the 12.66 million people diagnosed with cancer across the world died. Approximately 40% of those diagnosed had one of the four site cancers—lung, breast, colorectal or stomach. With the growth and ageing of the world population, the burden of cancer is expected to concurrently increase (41). In view of this, international discussions and related interactive processes play a substantial role as they could lead to targeted initiatives that would have significant impact at the local level, implying possibilities of mobilization of resources at the international level, and the potential establishment of a Global Partnership for cancer to mirror the effect that similar initiatives have effected in tuberculosis and HIV/AIDS, among other diseases (42). Cancer is a serious global problem and needs recognition as a vital part of the global health agenda. In this multifaceted environment, the organization of a congress brings the world’s best minds in cancer control together to reframe the problems, exchange insights, share solutions and experiences to further ideas and bridge future cancer/NCD control work. The intent is to stimulate cancer control efforts at a global level. Through knowledge gains from the ICCC, participants can raise awareness, imbibe learnings and stimulate more effective action to impact cancer control.  To respond effectively to the rising burden of cancer/NCD, the Congress can be used as an instrument to catalyze the development of population-based national cancer control or       18  integrated non-communicable disease programs as well as initiate formation of networks. Many in the world are looking at benefits of certain screening methods, specific treatments or tested prevention mechanisms. This study is instead investigating that the interest and involvement of participants in cancer control increases following the Congress; participants are motivated to advance cancer control. This understanding will be effective in building capacity and generating a transnational impact on cancer/NCDs that is beyond the control of individual governments. Finally, the study’s focus on individual actions is unique and is of considerable significance to scholars and literature.  1.7.1 The Rationale In 2003-04, it was apparent that a number of countries were developing national cancer control strategies and needed a forum to discuss common challenges, share successes and learning (43). This perceived need gave birth to the ICCC—the first one being held in 2005 by the architects of the Canadian Strategy for Cancer Control as a neutral forum for knowledge exchange and to contribute to improving global population-based cancer control by placing it on the world health agenda. Since the first Congress, three additional congresses have been held. An active interest in determining the best way forward to continue such efforts has been expressed by the leadership, to identify effective ways to contributing to cancer prevention and control globally. And the increased recent attention more generally to NCDs, makes an assessment of the contribution of the organization and impact of international congresses all the more timely. In order to determine the added value of congresses, the level of motivation among participants at each of the ICCCs was explored. This examination will help to identify       19  relationships among the variables, provide an explanation to the effects when a congress proceeds and the effects produced in terms of human behaviour. That is, this study will assess whether congresses effect behaviours/activities, whether that effect is intended by the individual as result of the Congress, whether individuals from different resource countries (low, middle and high resourced countries) see a different value-add of the congresses and, finally, if or how much of the change in behaviour/activities can be attributed to participants having attended the Congress as opposed to their attendance of other meetings (44).  1.7.2 The Gap Evaluation of most conferences is fairly part of the routine. However, few to none actually address the short and long term impact using an evidence-based approach. Instead, most focus on evaluating congress logistical arrangements, some collect information perceived to be learnt by participants, and some dwell on how the information provided at the congress was used (45-48).  After considerable literature search in databases PubMed, Medline, PsychInfo, Canadian Institute of Health Research, Canadian Cancer Society, Canadian Partnership Against Cancer, Centre for Disease Control, Public Health Agency of Canada, NCI Cancer Control and Population Sciences, Proquest, and Google Scholar, it was found there is very limited assessment or evaluation on congresses and next to none on cancer congresses in specific4. Additionally, a                                                  4 The literature was investigated by reviewing articles published in peer reviewed journals, grey literature, WHO publications, web site searches and open source web journals (for example, Implementation Sciences, Open Access Public Library of Science). The data bases were used to search (i) key terms: cancer control, capacity building, knowledge translation, population health, chronic diseases, national cancer control programs/plans, regional       20  scan of the websites of major international agencies like the World Health Organization (WHO), the International Union against Cancer (UICC), the International Network for Cancer Treatment and Research (INCTR), the International Atomic Energy Agency-Programme of Action for Cancer Therapy (IAEA-PACT), and the American Cancer Society (ACS) among others, confirmed that evaluation of conferences was generally limited to participant satisfaction questionnaires. Some of these organizations have detailed information on an evaluation process but it is not conference-specific. The questions “What is the impact of a congress and are Cancer Control Congresses of added value?” and “Do they cause behaviour and activity change that promote outcomes of cancer control?” are important for us to understand and assess prior to millions of dollars being spent on an ongoing basis by countries organizing cancer conferences. Furthermore the search has not revealed any study done as yet that examines congresses’ impact on knowledge dissemination at a population level. As of yet, no documentation has been found that examined the knowledge translation through plenary or workshop sessions or poster presentations. Determining the impact of knowledge dissemination is one of the primary intents of this study. Remarkably, little is known about the impact of congresses. Hence, there is a need for this study. The findings from this study will be useful for health care congresses to draw on a tested congress logic model. This evaluation approach may serve as a model for other global conferences.                                                                                                                                                              alliances, FCTC, community of practice, etc. (ii) authors: Jon Kerner, Ross Brownson, Larry Green, Russ Glasgow, Robert Beaglehole, etc.        21  1.8 Organization of the Dissertation This study consists of five chapters, a bibliography and appendices: Chapter 1 provides an introduction to the study. Chapter 2, “Literature Review,” provides a summary of literature that summarizes the state of knowledge regarding building capacities to address global challenges (such as cancer control), including explicit exploration of constructs such as collaboration, knowledge translation and communities of practice that is critical to such processes. In this context, the character of what this means in a global context is explicitly examined. Finally, attention is given to critically examining literature on evaluation methods relevant to assessing the value of initiatives such as ICCCs.    Chapter 3, “Methodology and Design,” discusses the research methodology and design utilized for the study, the explanatory and outcome variables, and how they are measured or operationalized, as well as the statistical techniques employed, the unit of analysis, the sampling strategy, the data collection methods and timelines, associated ethical issues, and the study strengths and limitations.   Chapter 4 presents and discusses the results obtained from testing the research hypotheses at the 3rd and 4th International Cancer Control Congresses.  Chapter 5, “Discussion,” presents the interpretation of the study findings and examines the implications of the research findings. Study limitations and future research recommendations are also presented. The chapter wraps up with a conclusion of the findings. Additionally, the       22  chapter  presents considerations for future studies relevant to the thesis topic by identifying areas of potential investigations opened up by this groundbreaking study. This particular section in the chapter presents an area of discussion of how global challenges faced by the WHO Framework Convention on Tobacco Control (FCTC) are being addressed and how FCTC’s global framing of tobacco control changed thinking. It begins to identify whether similar global framing can be applied to cancer/NCD control to stimulate global action. Then, it presents a brief reflection on what the 2011 UN Summit did for NCDs, and starts to identify possible elements for a global framework for cancer control taking learning from the successful international WHO Framework Convention on Tobacco Control.          23  CHAPTER 2: LITERATURE REVIEW  To effectively address a global challenge, such as cancer, there is overwhelming consensus that substantial improvements must be made in the capacities for undertaking the actions that are needed. In this chapter, the investigator takes stock of what current scholarship has to say about processes that could be contributing to pursuing challenges, noting that both scientific and grey literature guided the researcher in developing research questions and selecting the appropriate methodology for the research.   The first section of the chapter reviews approaches to building capacity including communities of practice and frameworks to evaluate and establish evidence of the effectiveness of population-based approaches. The second section provides an insight on collaboration, outlines enablers for effective collaborative relationships, and introduces a conceptual framework that can be used to establish realization of outcomes. The third major section of the chapter reviews knowledge translation, frameworks for design and evaluation of complex interventions, knowledge utilization and measures. The fourth section examines global cancer control declarations to outline possible elements of a future global framework for cancer control similar to FCTC that would include a critical assessment of recognized global dimensions and interventions for cancer control. The final section provides an overview of the WHO Framework Convention on Tobacco Control (FCTC), including examining the key role global governance played in addressing the pandemic and how global framing of the issue changed worldwide thinking of the issue. The concluding section of the chapter reviews literature on methodology, examines the scientific basis that suggests the survey tool as appropriate for data collection, and       24  reviews complementary data collection methods and associated challenges with data analysis and synthesis. A sub-section discusses findings on evaluation methodology and validates the contention that conferences create a forum for networking, exchange of ideas, and sharing of knowledge and experiences. Another sub-section inspects logic models, mapping frameworks, and their application and relation to congress planning and evaluation. 2.1 Capacity Building  Capacity building (CB) is understood as “enhancing the ability of an individual, organization or a community to address health issues and concerns” (23, 49). CB supports infrastructure, leadership and program development, long term sustainability, and increased access and utilization of services being offered (50, 51). Over the years, CB within health care has become an area of focus. CB is an ongoing process that involves a pattern of learning and readjustment over time. There is a trade-off between the two domains of CB: infrastructure and governance, and stakeholder relations. These are highly interdependent and are impacted by environmental and market forces (52).   Capacity building is effective when the program generates the desired outcomes, can be replicated, is sustainable, and indirectly generates new additional health outcomes. Ideal programs show modest health gains but high sustainability, coupled with the ability to tackle other related health issues in addition to the issue currently targeted. These are preferred over programs that show high health gains but low sustainability. CB influences the multiplication of health gains, both of which need to be measured to determine effectiveness. Tracking progress of       25  CB can be done through three types of indicators: service development, sustainability, and increased problem solving capacity (53).   The literature establishes that CB is not only about providing training and information sharing to achieve short-term outcomes, but also about achieving long term sustainability through ongoing training and follow-up, and cultivating internal motivation within the target population and collective pooling of resources to enable system change (54). Effective capacity building efforts where this has been observed for targeted efforts includes cervical cancer screening, the global strategy for diet, physical activity and health, and the Framework Convention on Tobacco Control.  For cancer/NCD control, the researcher has reviewed a variety of population-based approaches to build capacity as well as researched frameworks that can be used to evaluate and establish evidence of the effectiveness of these population-based approaches (see Table 2.1 below for shortlisted approaches and Table 2.2 for shortlisted frameworks to evaluate). It is worth noting that these tables are not exhaustive as the researcher has chosen illustrative examples that provide a representative summary of the literature. Table 2.1: Six approaches to build capacity in cancer/NCD control Capacity Building Approaches Key Features #1 Four-Approach Model(55) Four approaches that include a bottom-up, top-down, partnership and community organizing approach. This model has been applied widely. Examples: (a) the capacity building       26  Capacity Building Approaches Key Features assistance program by the Asian Pacific Islander Organizations used the model to build culturally appropriate, scalable and evidence based HIV/AIDS prevention capacity in the minority Asian Pacific community (56), (b) the Australian programs Sun Smart and Slip!Slop!Slap! use a mix of the four approaches. A multidimensional program in approach with system wide health promotion where attitude and behaviour change is coupled with policy change, increased levels of awareness. Also, a comprehensive strategy addressing the problem in social, economic, political and organizational context; founded on an integrated research and evaluation platform; with media positively influencing the community attitudes leading to a culture change (57), (c) Community capacity building, a bottoms-up participatory approach supported by the government, helped develop the river blindness program in Africa (58).  The framework adopted in this approach was a multi-sectoral change framework that incorporated both individual and social change. #2 Centre for Disease Control (CDC) Comprehensive Phased Model Approach(59) A harmonized model with four phases for strengthening system capacities: set objectives, determine possible strategies, plan feasible strategies, implement effective strategies, and monitor and evaluate. Central to the model is a pool of knowledge to be used for decision making with data and evaluation woven into every stage. This approach was       27  Capacity Building Approaches Key Features followed by the WHO to help build capacity for NCDs. An example is WHO’s comprehensive approach to cancer control. The comprehensive approach has four focus areas: surveillance (to identify the need and depth of intervention required and to monitor interventional outcomes), primary prevention (reduction of exposure and risk factors), secondary prevention (screening high risks and timely diagnosis), and diagnosis, treatment and palliation (clinical assessment, treatment and end of life care) (60). This approach had a unique framework for building integrated organizational capacity through a three-stage process that integrates planning, monitoring and evaluation for attaining short term outcomes and long term sustainability (61). #3 Primary Health Care Approach(21) An approach that shifts the focus from episodic acute care to a proactive prevention health promotion care approach. With proven evidence that prevention and early detection interventions are cost-effective, the Pan American Health Organization (PAHO-WHO) promoted routine care and exams for the four risk factors in primary health settings as the recommended approach for chronic disease prevention. Strategies included development of partnerships, multi- sectoral collaboration and networks for NCD, advocacy for policy changes based on WHO resolutions, recommendations of tobacco control, strengthening heath services for integrated prevention and management of chronic NCDs, and capacity       28  Capacity Building Approaches Key Features building for community based actions (21). While, another PAHO initiative CARMEN (collaborative action for risk factor prevention and effective management of non-communicable diseases) for NCD prevention and control used integrated community-based intervention and networks. Composed of three strategies and three lines of action, it builds capacity and promotes exchange of knowledge and experiences through a network of countries supporting collaboration to address the NCD burden (62). WHO has formulated a package of low cost, low technology effective mix of individual and population based interventions called WHO PEN (Package of Essential NCD Disease Interventions), which can be implemented and assessed on an ongoing basis at different levels following an assessment of capacity at primary care facilities, training of healthcare workers, and putting in of information systems (28).  This approach adopted an analytical framework that compares post and pre intervention rates – identifies barriers, prioritizes barriers, develops interventions & strategies, implements, monitors and evaluates (63). #4 WHO Integrated Approach to NCDs (64) The 2009 launch of WHO-IAEA (International Atomic Energy Agency) joint programme on cancer control promotes an integrated approach to non-communicable diseases including cancer. This builds on the WHO NCD Action Plan to reduce risk, morbidity and mortality due to the four shared risk factors       29  Capacity Building Approaches Key Features (tobacco, physical inactivity, unhealthy diets, and alcohol) for the four diseases (cardiovascular, respiratory, cancer, diabetes). A favored approach in countries is the development of national cancer control programs integrated into the health system for equitable implementation of proven evidence based interventions from prevention to palliation. It facilitates judicious use of resources for the entire population (32). This approach promotes using the WHO Stepwise Framework (65). #5 Public Private Partnership Approach (33) The private sector is taking on a larger role in population- based cancer policy making, prevention and control (e.g., Pepsi and Pfizer have expanded efforts to include workplace wellness programs, tobacco control, physical activity programs, cancer screenings, reduction of carcinogens, and promotion of healthy eating in the workplace). In turn, the public sector invests more in clinical research by increasing the number of publicly funded trials compared to pharmaceutical trials; developing knowledge management platforms; using communication mediums with more reach, currency and depth for sharing information; supporting virtual communities of practice (CoPs); developing “cancer control packages” or NCD packages that include cost effective strategies and interventions targeted to the needs of the country, have the most impact; and matching the resource level of the country (33).        30  Capacity Building Approaches Key Features No framework was identified for this approach. #6 Community Development Approach (23, 49) BC Healthy Living Alliance (BCHLA) population-based approach to capacity building is community capacity building strategy (CCBS). It has interventions and strategies addressing the four modifiable risk factors based on needs of the community and resources available. CCBS promotes regional and community networks, aligns BCHLA initiatives with network partners, facilitates capacity building at community level, and expands opportunities for improving integrated health within high risk communities (49). To implement CCBS effectively a community should be ready to receive it, effective coalitions need to be developed within the community, the program must be what the community wants, it should be transferred across as proven rather than being customized, and adequate resources, training, evaluation must be attributed to it (66). The advocated CCBS framework brings emphasis on leveraging existing networks, selecting priority communities, building capital within the community (i.e. investing in local leadership partnerships) focusing on sustainability, addressing community specific needs and keeping a regional focus (49).   Following the literature review, the more widely accepted population-based approach is WHO’s integrated approach to NCDs using their stepwise framework. It has four components of       31  surveillance, primary prevention (decrease exposure, address risk factors), secondary prevention (screening of high risk population) and diagnosis/treatment/palliation. WHO’s ‘Integrated system for comprehensive cancer control’ approach focuses on balancing evidence-based and outcomes-focused interventions within the prevailing health system’s political, social, cultural and economic factors. For realizing National Cancer Control/NCD Plans, it is recommended that the ‘WHO Stepwise Framework’ be used with its three planning and three implementation steps. Planning steps include a needs assessment, surveillance of risk factors and burden of the chronic disease at a population level to answer questions, such as “Where are we now?” Answering “Where do we want to be?” enables defining goals, setting priorities, and adoption of a cancer control/chronic disease policy which sets out the vision for prevention and control for the long term. Finally, answering “How do we get there?” helps identify the most effective interventions to implement outlined policies. After taking into account the feasibility, availability of resources, country readiness, inter-sectoral cooperation, constraints and barriers to action interventions be implemented in a stepwise manner of three steps again based upon country readiness and resources available in the country-core (using existing resources), expanded (reallocation of resources), desirable (scaling up using new resources) (25, 65, 67).  Table 2.2 below provides shortlisted frameworks to evaluate effectiveness of population- based approaches to building capacity.         32  Table 2.2: Frameworks for evaluating effectiveness of population-based approaches to building capacity  Framework for Evaluating Key Features #1 Rootman’s 8 step framework (68) Begins with Describing the program/initiative via a logic model  Identifying issues and questions through a consensual process  Designing data collection processes based on the type of evaluation, timeline,  client needs, target of assessment Collecting the data Analyzing and interpreting the data to compare the observed and expected outcomes Making recommendations with all stakeholders involved in interpreting results Disseminating findings to financial supporters and others, and Taking action by developing an action plan that identifies resources, actions and processes  (68, 69). #2 CDC six step participatory evaluation framework There are six steps: Engage stakeholders invested in the program or those who have a stake in what will be done with the results Describe the program using logic models to clarify components and intended measurable outcomes  Focus the evaluation design to determine evaluation questions as logic model goes from short to long term  Gather credible evidence by identifying data sources, methods, and developing indicators  Justify conclusions by analyzing the evidence  Ensure use and share lessons with stakeholders (70).  # 3 WHO evaluation  WHO is developing supporting tools customized to local needs and is promoting in LMCs the use of its innovative and action based package of essential NCD disease interventions in primary care as the cost effectiveness of these proven low-cost       33  Framework for Evaluating Key Features interventions will stretch limited country resources, benefit populations and empower the health workers. To assess effectiveness of these efforts, each intervention has simple, reliable and valid indicators that will evaluate the ‘managerial, operational, technical, epidemiological aspects’ of implementing the WHO Package (28).  Evaluation assesses progress and accomplishments to determine effectiveness. While evaluation is often a final step in a process, optimally it should be built at the start and should be ongoing (71). Described below are frameworks for evaluating capacity building efforts. Of the three shortlisted frameworks below, the preferred framework is the Center for Disease Control (CDC) model, which includes a six step evaluation framework and eleven tested and validated performance measures. Three of the six steps in the framework are engaging stakeholders, outlining logic models, and focusing the evaluation design, leading to the development of three self-evaluation tools. The six steps of the framework are not meant to be a rigid approach. The desired kind of evaluation, its intent and purpose, and how it will be used, determine the questions, methods and level of details needed (70). The evaluation provided data on funding and feedback that would help improve survey questionnaires, establish the feasibility of conducting a standardized study of programs to identify issues that were important in developing/implementing programs and encouraging a culture of quality improvement through evaluation. Also, this evaluation framework for Public Health was found to be useful for a tuberculosis (TB) contact investigation program self-assessment (70, 72, 73). The same CDC       34  framework was also used in combination with a logic model by Lafferty et al. to evaluate comprehensive community initiatives (74). Rochester et al. provide examples to show that evaluation of Comprehensive Cancer Control (CCC) may be used to evaluate a program or to specific interventions/activities within a plan. For example, in Iowa, the goal was to evaluate maintenance and function of a CCC consortium at the state level; in Maine, an objective was to evaluate the state cancer plan and selected goals and objectives at the intermediate outcome stage; and Pennsylvania developed an evaluation plan with questions on process and outcomes to identify barriers of implementation (70).   2.1.1 Community of Practice (CoP)  Communities of practice (CoP), valuable means of capacity building, are defined as “groups of people who share a passion for something that they know how to do and who interact regularly to learn how to do it better” (75-78). CoPs vary greatly from informal networks to formal structured teams. CoPs are formed by people who embark on collective learning in an area of practice, it is not merely sharing an area of interest─in a well-functioning CoP, they are energized by the initiative, value their interactions and may develop over time a common sense of identity and a unique perspective on their topic as well as a body of common knowledge, practices, and approaches. The common characteristics of CoPs to varying degrees are social interaction, knowledge sharing and creation, and identity building. The core elements that develop and sustain a CoP are a sense of belonging, participation and collaboration (75, 76, 78, 79).        35   One example of a CoP is the “knowledge spiral” model adopted by a group of cancer surgeons which is supported by five tools that include a communication system, project support, and access to data, among others. They advocate this model for promoting sustainable learning experiences and as an instrument to build evaluation capacity for evaluating surgical outcomes (80, 81). CoPs use different methods of engagement, are tools for knowledge management, a platform for collaborative learning which may lead to creation, management and dissemination of new knowledge and practice development (78). A CoP is a forum that is being looked at with fresh eyes to confirm its added value by many organizations for example the Canadian Partnership Against Cancer (CPAC) as it provides practitioners (i.e., members of a CoP) a forum for exchanging knowledge, doing collaborative problem solving within real situations, translating evidence based practices to promote practice change amongst the practitioners. They promote communications, networking, and collaborations across organizations (82). CoPs focus not only on sharing best practices but creating knowledge and resources to advance the issue of interest. Members develop mutual goals and priorities by negotiating and active communications (83).  CoPs at different levels in global cancer control are being promoted by ICCCs, as the Congr