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To what extent should the public be involved in health disinvestment decision making : a mixed methods… Daniels, Thomas Andrew 2016

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   TO WHAT EXTENT SHOULD THE PUBLIC BE INVOLVED IN HEALTH DISINVESTMENT DECISION MAKING: A MIXED METHODS INVESTIGATION INTO THE VIEWS OF HEALTH PROFESSIONALS IN THE ENGLISH NHS  by THOMAS ANDREW DANIELS  A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY  in   THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES  (Population and Public Health)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)   January 2016  © Thomas Andrew Daniels, 2016   TO WHAT EXTENT SHOULD THE PUBLIC BE INVOLVED IN HEALTH DISINVESTMENT DECISION MAKING: A MIXED METHODS INVESTIGATION INTO THE VIEWS OF HEALTH PROFESSIONALS IN THE ENGLISH NHS    By THOMAS ANDREW DANIELS    A thesis submitted to the  University of Birmingham  for the degree of  DOCTOR OF PHILOSOPHY    Health Services Management Centre School of Social Policy College of Social Sciences  University of Birmingham  February 2015 ii  Abstract Demand for health services is growing, but funding is often failing to keep pace. To ensure that budgets are balanced and that delivered services continue to be high quality, decision makers are having to set priorities, removing funding from some services- this is disinvestment.  This thesis details research incorporating a literature review followed by a two stage empirical investigation into the way that disinvestment decisions are made and whether or not the public should be involved. The first stage is a Q-Methodology study, the second is in-depth interviews. The population for the study is NHS health professionals (including managers and clinicians). 55 participants took part in the Q-study, and of these, 20 took part in follow-up interviews.  The study highlighted three distinct perspectives, all of which supported public involvement. One was unequivocal in its support, another highlighted some potential disadvantages to involving the public and the third suggested that the public should have the freedom to choose whether they became involved. The follow up interviews re-iterated participants’ support for involvement but suggested that the public should become involved earlier and to a greater extent in those disinvestment decisions which affected more patients and/or resulted in a tangible loss of services.   iii  Preface This thesis is original, unpublished, independent work by the author, T. A. Daniels.  All of the research presented was conducted by the author at the Health Services Management Centre, University of Birmingham and was written up there and at the School of Population and Public Health, University of British Columbia. Full ethical approval for this project was granted by the University of Birmingham Humanities and Social Sciences Ethical Review Committee on 15th October 2012 (application number: ERN_12 -0873). The parameters of the study were approved by the University of British Columbia Research Ethics Board on 15th November 2013 (certificate number: H13-02827).             iv  Table of Contents ABSTRACT............................................................................................................... ii PREFACE..................................................................................................................iii TABLE OF CONTENTS ........................................................................................... iv LIST OF TABLES ..................................................................................................... x LIST OF FIGURES ................................................................................................... xi ACKNOWLEDGEMENTS .......................................................................................xii DEDICATION .........................................................................................................xiv CHAPTER 1- INTRODUCTION................................................................................ 1 1.1 Introduction .......................................................................................................... 1 1.2 The Global Health Context .................................................................................... 1 1.3 The National Health Service .................................................................................. 5 1.4 Historical NHS Finances ....................................................................................... 6 1.5 NHS (Re) Organisation ......................................................................................... 7 1.6 Current NHS Finances .......................................................................................... 9 1.7 Disinvestment in the NHS ................................................................................... 11 1.8 Thesis Contents and Structure  ............................................................................. 14 1.9 Summary ............................................................................................................ 20 CHAPTER 2- DISINVESTMENT DECISION MAKING ......................................... 21 2.1 Introduction ........................................................................................................ 21 v  2.2 Priority Setting and Disinvestment....................................................................... 21 2.3 Types of Disinvestment Decisions  ....................................................................... 24 2.4 Non-Criteria Based Approaches to Priority Setting and Disinvestment .................. 25 2.5 Criteria-Based Approaches .................................................................................. 28 2.6 Criticisms of Arbitrary Approaches, Needs Assessment and Core Services ........... 31 2.7 Applying Health Economics Principles  ................................................................ 33 2.8 Economic Evaluation .......................................................................................... 34 2.9 Overcoming the Limitations- Programme Budgeting and Marginal Analysis ......... 43 2.10 Distinctive Elements of Disinvestment............................................................... 47 2.11 Prospect Theory ................................................................................................ 50 2.12 Summary .......................................................................................................... 53 CHAPTER 3- STAKEHOLDERS AND JUSTICE IN DISINVESTMENT DECISION MAKING................................................................................................................. 55 3.1 Introduction ........................................................................................................ 55 3.2 Justice and Fairness............................................................................................. 55 3.3 Stakeholders ....................................................................................................... 59 3.4 Internal Stakeholders........................................................................................... 60 3.5 External Stakeholders  ......................................................................................... 62 3.6 The ‘Public’ ........................................................................................................ 65 3.7 Involving the Public  ............................................................................................ 67 3.8 Arguments Against Involvement ......................................................................... 71 3.9 Ladder of Participation........................................................................................ 74 3.10 Methods for Involving the Public in Disinvestment Decision Making ................. 83 vi  3.11 Summary and Research Questions ..................................................................... 91 CHAPTER 4- LITERATURE REVIEW ................................................................... 93 4.1 Introduction ........................................................................................................ 93 4.2 Review Objectives .............................................................................................. 93 4.3 Literature Review Approach................................................................................ 95 4.4 Review stages ....................................................................................................103 4.5 Review Findings ................................................................................................107 4.6 Summary of the Literature ..................................................................................108 4.7 Propositions.......................................................................................................114 4.8 Proposition one: Health Disinvestment Decisions Affect the Whole Community; Public Involvement in these Decisions can Offer a Number of Benefits to the Community as a Whole ............................................................................................115 4.9 Proposition two: There is no ‘one size fits all’ Approach to Public Involvement in Priority Setting, but Poorly Implemented Public Engagement is Worse than None at All ...............................................................................................................................120 4.10 Proposition three: The Public Should be Involved in Disinvestment Decision Making Because they Want to be Involved. ..............................................................127 4.11 Proposition four: The Public have a Different View from Health Professionals and Decision Makers- they Should be Involved Because Otherwise their Views Would not be Adequately Represented ......................................................................................137 4.12 Research Questions ..........................................................................................147 4.13 Summary .........................................................................................................151 CHAPTER 5- METHODOLOGY, RESEARCH DESIGN AND SAMPLING...........152 5.1 Introduction .......................................................................................................152 5.2 Re-Visiting the Research Questions  ....................................................................152 vii  5.3 Involving the Public in Research ........................................................................154 5.4 Data Requirements and Research Paradigm ........................................................156 5.5 Research Design ................................................................................................159 5.6 Mixed or Multiple Methods? ..............................................................................161 5.7 Sampling Strategy..............................................................................................166 5.8 Summary ...........................................................................................................170 CHAPTER 6- RESEARCH METHODS ..................................................................171 6.1 Introduction .......................................................................................................171 6.2 Studying Subjective Views on Public Involvement ..............................................172 6.3 In-Depth Semi-Structured Interviews..................................................................203 6.4 Triangulation, Testing and Verification...............................................................209 6.5 Ethical Approval ................................................................................................210 6.6 Summary ...........................................................................................................212 CHAPTER 7- RESULTS PART ONE- WHETHER AND WHY THE PUBLIC SHOULD BE INVOLVED IN DISINVESTMENT DECISION MAKING ...............213 7.1 Introduction .......................................................................................................213 7.2 Should the Public be Involved in Disinvestment Decision Making? Why?  ...........213 7.3 Semi-Structured In-Depth Interviews..................................................................239 7.4 Arguments for Reduced Involvement..................................................................248 7.5 Summary ...........................................................................................................256 CHAPTER 8- RESULTS PART TWO- EXTENT AND TIMING OF PUBLIC INVOLVEMENT IN DIFFERENT TYPES OF DISINVESTMENT DECISION ......258 8.1 Introduction .......................................................................................................258 viii  8.2 To what Extent Should the Public be Involved in Disinvestment Decision Making? ...............................................................................................................................258 8.3 At what Stage in the Disinvestment Decision Making Process Should the Public Become Involved? ...................................................................................................272 8.4 What Types of Decision Should the Public be Involved in? .................................278 8.5 Scope and Scale  .................................................................................................286 8.6 Interviewee Recommendations for Improved Practice .........................................287 8.7 Conclusion ........................................................................................................292 CHAPTER 9- DISCUSSION ...................................................................................294 9.1 Introduction .......................................................................................................294 9.2 Support for Public Involvement ..........................................................................294 9.3 Stage and Extent of Involvement in Decisions .....................................................295 9.4 Reflecting on Findings  .......................................................................................295 9.5 Early Involvement .............................................................................................307 9.6 Assessing Levels of Public Influence ..................................................................312 9.7 Implications for Decision-Making Frameworks...................................................319 9.8 Accountability for Reasonableness (A4R) and Disinvestment ..............................326 9.9 Stakeholder Claims ............................................................................................328 9.10 Limitations and Reflections  ..............................................................................330 9.11 Summary .........................................................................................................345 CHAPTER 10- CONCLUSION ...............................................................................347 10.1 Introduction .....................................................................................................347 10.2 Overall Summary .............................................................................................347 ix  10.3 Key Considerations for Decision Makers  ..........................................................348 10.4 Contribution ....................................................................................................349 10.5 Implications and Recommendations for Policy and Practice ..............................352 10.6 Implications and Recommendations for Research and Theory............................353 10.7 Next Steps .......................................................................................................356 REFERENCES........................................................................................................359 APPENDICES ........................................................................................................395 Appendix One- Participant Information Sheet...........................................................395 Appendix Two- Example Interview Schedule ...........................................................398 Appendix Three- Example Interview Transcript (Participant 43)  ...............................399 Appendix Four- Technical Appendix- Factor Analysis ..............................................413 Appendix Five- Online Instructions Given to Q-Methodology Participants  ................433 Appendix Six- Coding Structure  ..............................................................................435 Appendix Seven- Literature Review Table  ...............................................................445 Appendix Eight- Study Participant Information ........................................................465 Appendix Nine- Literature Review Data Extraction Form .........................................468    x  List of Tables 4.1 Initial Literature Review Search Terms ................................................................ 95 4.2 Results from Initial Literature Review Search String ............................................ 97 4.3 Revised Search Terms ......................................................................................... 98 4.4 Results from Revised Search String ..................................................................... 99 4.5 Sources of Included Papers.................................................................................108 6.1 Q Sample Matrix ...............................................................................................179 6.2 Matrix Showing Linkages with Existing Theory..................................................181 6.3 Final Q Sample  ..................................................................................................185 7.1 Breakdown of Participants in Q-Study by Professional Background, Level of Disinvestment Experience and Organisation .............................................................215 7.2 Factor Array Showing the Position of Each Statement under Each Factor ............217 7.3 Summary of Factor Viewpoints  ..........................................................................220 7.4 Factor Loadings for Each participant on to Each Factor  .......................................221 7.5 Breakdown of Participants in In-Depth Interviews ..............................................241       xi  List of Figures 3.1 Arnstein's Ladder of Citizen Participation ............................................................ 76 4.1 Literature Review Decision Tree ........................................................................102 5.1 Mixed Methods Design and Sampling Approach.................................................169 6.1 Example Q-Sorting Grid ....................................................................................190 7.1 Extremes of the Ideal Q-Sort for 'Advocates of Involvement’  ..............................224 7.2 Extremes of the Ideal Q-Sort for 'Cautious Supporters' ........................................228 7.3 Extremes of the ideal Q-Sort for 'Freedom of Choice Group' ...............................234 8.1 Scope-Scale Matrix Showing Extent of Public Involvement ................................287                 xii  Acknowledgements Thank you to my supervisors Dr Iestyn Williams, Prof Stirling Bryan, Dr Suzanne Robinson and Dr Craig Mitton. Your help, guidance and encouragement throughout the process of conducting and writing up this research has been invaluable. Also thank you to Dr Stephen Jeffares for your specialist input during the Q Methodology stage. I am greatly indebted to all of you on a personal and professional level and could never have got to this point without your support- thank you in particular for reading through and commenting on so many drafts of this thesis! I would also like to thank Universitas 21 for providing the grant for my study and for giving me the opportunity to live and work in Vancouver for a year. In addition, I would like to thank all of the academic and administration staff at the University of Birmingham and the University of British Columbia who made my joint PhD possible and made me feel so welcome. The NHS would be nothing without its talented and committed staff. During the course of this research I had the pleasure of interacting with a small proportion of this group and I would like to thank each and every participant for giving up their time freely and for participating so whole-heartedly in the study. I would also like to thank the members of the public who gave up their time to take part in the early stages of the research. Lastly I would like to thank my family and friends for their encouragement over xiii  the last three years, and for maintaining faith that I would get the thesis finished even when I wasn’t convinced myself! In particular I would like to thank my partner Lindsey for embarking on this adventure with me and believing in me and my research. I would also like to thank Lindsey’s parents, Sue and Paul, for their generosity in putting up with me and providing a roof, an office and catering whilst I was writing up.                  xiv  Dedication For Lindsey, thank you for all of your encouragement, support and love1  Chapter 1- Introduction  1.1 Introduction This chapter sets the context within which the research into public involvement in health disinvestment decision making detailed in the rest of the thesis was planned and carried out. It gives a brief introduction to the current state of global health funding, then pays specific attention to the situation within the English National Health Service (NHS), detailing its historical development and recent financial problems in order to explain why it was an ideal setting within which to base the research. In addition to setting the research context at the outset of the data collection, the chapter also gives updates as to how the context changed over the course of the project and how the relevance of the research and its findings have increased since the project commenced. The introductory chapter concludes by defining a number of key terms used throughout the study and setting the parameters of the research before briefly introducing the contents of the rest of the thesis and providing an overview of the following nine chapters.  1.2 The Global Health Context According to the United Nations (2012) the global population grew by almost 4.5bn between 1950 and 2010, almost tripling in size to reach the 7bn level. This increase in population is in large part due to improvements and advances in health care and public health which have seen average life expectancy across the world increase from 48 years in 1955 up to 70 years in 2012 (World Health Organization, 1998, 2012a). Indeed the global population has aged to such an extent that by 2025 2  it is predicted that over-65s will make up 10% of the total population, with the proportion of these older people requiring support from working age adults predicted to rise to 17.2% in 2025 from 10.5% in 1955 (World Health Organization, 1998). Where previously the majority of people died from conditions such as pneumonia, influenza or gastric infections, those in the developed world are now much more likely to die from heart disease or cancer (Jones et al., 2012). These are conditions which can be treated and managed, if not cured, and where, in the past, patients may have died a painful but relatively quick death from an infectious condition, they are now able to live with these long-term conditions for extended periods. Across the developed world, those patients living with multiple co-morbidities are becoming ‘the norm rather than the exception’ (Department of Health, 2014, p.3). Similarly, as the developed world has become wealthier there has been a marked increase in ‘lifestyle’ conditions or ‘diseases of affluence’ such as Type 2 Diabetes, Asthma, Coronary Heart Disease and Peripheral Vascular Disease (Ezzati et al., 2005). Whilst taking millions of people out of poverty, seeing deaths through nutritional deficiencies, perinatal and maternal conditions, respiratory infections and infectious and parasitic diseases all but wiped out in the West (Stevens, 2004), this increase in wealth has given them increased access to alcohol, tobacco and richer processed foods and precipitated a dramatic rise in preventable, costly long-term conditions. 3  As conditions affecting populations have developed, so have the technologies available to treat these conditions- diseases such as cancer, for instance, can now be contained and beaten with the right course of treatment, and survival rates have improved greatly in recent years (Jemal et al., 2008). These technologies have not come cheaply, however, and this, in addition to the rapidly expanding population, is another key factor in the rising cost of delivering health care in the 21st century (Barbash and Glied, 2010). With the availability of new treatments capable of diagnosing conditions more quickly and accurately, and the availability of state of the art drugs able to treat previously incurable conditions, patients’ expectations of the treatments available, and of clinicians, have risen sharply. It is reported that this has also increased costs (Sabbatini et al., 2014) as clinicians potentially try to meet these increased demands by over-prescribing or continuing to allow patients access to unproven or unnecessary treatments (Campbell et al., 2007). In addition, health spending is being driven up by a global shortage of qualified staff. With highly qualified professionals in such short supply, health care providers have been forced to offer increasing wages in order to be able to meet patient demands, and staff have increasingly been drawn to wealthier countries (Kuehn, 2007). To further understand the current global health funding position, in 2012 the World Health Organisation estimated that global spending on health was worth $6.5trn (World Health Organization, 2012b). A recent report by Deloitte (2014) suggested that spending over the period 2014-2017 could rise by 5.6% per year; this would see global health spending topping $8trn per year by the end of 4  the decade.  Whilst a significant proportion of this health care inflation is due to spending in the US (estimated to be around $9000 per capita per year (World Bank, 2014)), the rest of the world has not been immune from rising prices. Regardless of health system organisation and public/ private funding and delivery models, many health economies across the globe have been squeezed by a combination of rising demand and health inflation, and have been forced into taking tough decisions regarding provision.  These decisions have entailed the setting of priorities and deciding how and where limited resources should be used. According to many health economists and commentators, an unavoidable aspect of this process of prioritisation is disinvestment (Mitton and Donaldson, 2004b). Disinvestment is a contested term, but within this study it refers to the act of removing funding from services, treatments and technologies, affecting their accessibility to patients. Within the literature different authors highlight different drivers for disinvestment, with some suggesting that it can be used to optimise service quality (Elshaug et al., 2007) and others foregrounding the need to disinvest in order to balance budgets and invest in alternative services (Donaldson et al., 2010b). Disinvestment decisions taken for both of these purposes are incorporated into this thesis, although the global economic climate dictated that financial drivers for disinvestment took precedence in the eyes of the majority of respondents.  5  Whilst it is recognised that some academics dispute the need for disinvestment on the grounds that further funding could be assigned to health services by governments, and that projections of the effects of population aging and health inflation could be overstated (Russell and Greenhalgh, 2012), the assumption that disinvestment is unavoidable is a premise of the study. Throughout this thesis disinvestment is defined as the removal of funding from services, treatments and technologies, affecting their accessibility to patients.  The thesis is written from a normative standpoint, whereby the researcher has an underlying view on how disinvestment decision making should be carried out and the principles that should guide this (Olsen and Richardson, 2013). The researcher takes the view that an explicit approach to the making of priority setting and disinvestment decisions is the most equitable, although it is recognised that this approach is not always taken in practice. One system faced with disinvestment decisions is the English National Health Service (NHS), within which the research reported in this thesis was carried out.  1.3 The National Health Service  The English NHS was founded in 1948 with the purpose of providing medical care which was free at the point of delivery and accessible to all regardless of their ability to pay1. Pulling together hospital care, primary care, mental health and a whole range of community services under one umbrella for the first time, the NHS                                                              1 Similar ‘NHS’ structures with similar principles exist in Scotland, Wales and Northern Ireland but they are all  administered separately. This research focuses solely on the NHS in England. Where the term ‘NHS’ is used in this thesis it refers to the English NHS unless otherwise stated. 6  revolutionised the lives of millions of Britons providing care from cradle to grave (Warden, 1995). Although having altered slightly over the intervening 65+ years (e.g. introducing prescription charges and charges for dental treatment in 1952) the founding principles of the NHS remain in place to this day and it is still funded through general taxation. Once described by Lord Lawson, the former Chancellor of the Exchequer, as ‘the closest thing the English have to a religion’(Brown, 2012, p.256), the NHS holds a unique place in the hearts of many of the country’s citizens. As a result of this, and the fact that, as a publicly run and funded service, it had come to be seen as politician led (Klein, 2007), the National Health Service has become increasingly politicised  and has become a key battleground over which elections are fought (Webster, 2002). Given this, the NHS has come to attract substantial media attention with decisions around funding, funding gaps and the use of public money coming under particular scrutiny (Dixon and Harrison, 1997). The design of decision-making processes therefore holds particular significance, and this seems only likely to increase in the future.  1.4 Historical NHS Finances When it was first founded the NHS was overwhelmed by unmet need as a generation of people who had lived through two World Wars came to recognise the difference that the new health service could make to their lives (Digby, 1998). Many people had lived and worked in poor conditions for years and had never previously been able to afford to seek treatment. Within a matter of years the NHS 7  was beginning to cost significantly more than its founder Nye Bevan or Prime Minister Clement Atlee’s government had originally bargained for.  By 1960 the UK was spending 3.9% of its GDP on health care and this proportion has only grown since, with 9.3% of the nation’s wealth committed to health spending in 2012 (OECD, 2014). Whilst this rise is substantial, it is less steep than the rises in a number of other countries, indeed of the 11 OECD countries with health spending figures published for 1960 and 2012 it is the smallest increase. France, for instance increased their proportion of health spending from 3.8% to 11.6% during that period, Canada went from 5.4% to 10.9% and Switzerland from 4.9% to 11.4% (OECD, 2014). The UK government has certainly committed significant sums to the English NHS- in 2014/15 the NHS budget had reached £133bn (Campbell, 2014) - but given the increases elsewhere, the argument that the government could and should be willing to commit more funds does bear some consideration (Appleby, 2013). 1.5 NHS (Re) Organisation The way in which health services are organised in England has changed markedly since the formation of the NHS; one of the most fundamental changes was the formation of the internal market in 1991. Described by Le Grand (1999, p.28) as a ‘massive social experiment’, this reform separated out the purchaser and provider roles within the NHS and, instead of continuing to provide hospitals and other health care providers with block funding contracts, encouraged them to compete for work in order to secure funding. Under the new system purchasers, or 8  commissioners, were charged with contracting providers to deliver the most cost-effective care for their local population (Rosen and Mays, 1998); it was hoped that competition between providers would improve quality and efficiency. The purchaser/ provider split remains in place today and, as is described within the methods chapter, representatives from both sides of the divide took part in this research. Despite the retention of the internal market, much has changed in the NHS since Prime Minister Margaret Thatcher’s reforms and, in 2012, the NHS in England underwent what has been described as its biggest re-organisation to date (Jowit, 2012) when the ‘Health and Social Care Act’ (Health and Social  Care Act, 2012) was passed. The passing of this act handed responsibility for commissioning (and de-commissioning) services over to groups of General Practitioners known as Clinical Commissioning Groups (CCGs); this responsibility had previously been held by Primary Care Trusts (PCTs). The act also encouraged greater involvement of the private sector within health care provision in England by requiring that more services be put out to tender, and attempted to remove layers of bureaucracy by disbanding Strategic Health Authorities who had previously acted to broker deals between commissioners and providers within the English regions.  The timing of this act is significant as far as the research is concerned because many of the changes were being enacted at the time that the empirical data collection was carried out, and all of the participants will have been affected in one way or another by the Health and Social Care Act. Some participants may have been given additional commissioning responsibility as a result of the act, some 9  may have lost a previous job or moved organisation as a result of it, and some may have been forced to compete with a wider range of private sector competitors following the act’s ascension. Although the research does not seek to draw any conclusions about the rationale behind the Health and Social Care Act, or whether or not it has achieved its objectives, its potential impact on the participants and their views should be borne in mind, particularly given the qualitative nature of the research.  1.6 Current NHS Finances The UK, like much of the rest of the developed world, suffered a severe recession beginning in 2008 and extending well into 2009 (Frankel and Saravelos, 2012). In attempting to stabilise the economy the UK government of the time invested £100bn’s into the banking sector, reduced Value Added Tax to stimulate demand, and embarked on a programme of quantitative easing. Whilst averting the possibility of a catastrophic banking collapse, the government’s actions did leave the country with a significant national debt (Ping Chan and Oliver, 2013); the Conservative/ Liberal Democrat coalition government formed in May 2010 have been attempting to reduce this through public spending cuts ever since. One of the aims of the Health and Social Care Act (2012) was to reduce management costs within the NHS. Although the NHS budget had been protected by the government from the spending cuts that affected many other departments (Hunter, 2010) the small annual increases that it was granted were not sufficient to meet the increasing demand. Health Secretary Andrew Lansley’s reorganisation 10  was seen as one possible way to make savings, as was the efficiency drive launched by then NHS Chief Executive Sir David Nicholson in May 2009. The ‘Nicholson Challenge’ asked NHS organisations to release £15bn to £20bn of efficiency savings between 2011 and 2014 (Hawkes, 2012); both this and Lansley’s mission to reduce bureaucracy were fresh in the minds of participants when data collection began in early 2013. Sir David Nicholson’s challenge was made to NHS organisations before the general election of 2010, and without full knowledge of what the future health funding settlement would be, but it set the tone for austerity within the NHS and began to detail how cold the climate  could become (Appleby et al., 2009). Following the general election the coalition settled on NHS funding which amounted to a real terms increase of around 0.1% per year2 to 2015/16; during that time demand is expected to have risen by between 3% and 6% per year (Appleby et al., 2014).  A recent report by current NHS Chief Executive Simon Stevens entitled the ‘Five Year Forward View’ (2014) challenged NHS organisations to work more collaboratively to deliver care and challenged the public to take more responsibility for their own health. The report set a demanding target for the NHS to deliver £22bn of recurring efficiency savings by 2020/21 and challenged a future government to deliver a further £8bn of annual funding in addition to this. It                                                              2 higher than anticipated inflation in 2010/11 actually resulted in a real terms fall in health spending in that year 11  is difficult to say how close to meeting the ‘Nicholson Challenge’ the NHS came (evidence suggests that it was not delivered in full (Torjesen, 2012)) but, regardless of this, Simon Stevens latest offering suggests that it is still facing a £30bn a year shortfall. Stevens’ report (2014) serves as a further indication of the timeliness of this research into disinvestment decision making in the NHS.  1.7 Disinvestment in the NHS The Stevens report makes a clear call for the integration of services, with, where appropriate, hospitals being encouraged to offer GP services and GPs being encouraged to provide hospital services in the community. There is also a call for NHS organisations to seek to share back office and management functions as well as a suggestion that the traditional barriers between health and social care should be broken down. The report (2014) stops short of suggesting that large scale disinvestment could be required to close the funding gap but, in order for the proposed re-organisations and integration to come close to bridging the £22bn gap (around 16.5% of the current NHS budget) it seems inevitable that some disinvestment will be needed (Harrison, 2014). As Donaldson et al. (2010b) suggested in the wake of the ‘Nicholson Challenge’, traditional approaches to efficiency such as lean thinking and quality improvement initiatives will not deliver the desired levels of savings. In order to deliver savings on the scale outlined by Stevens some level of disinvestment must be carried out. What is of interest in this thesis is the way in which these disinvestment decisions are taken and, in particular the extent to which the public could, or should, be involved. 12  As was suggested earlier, the Health and Social Care Act (2012) precipitated some of the biggest changes to health care purchasing and provision since the formation of the NHS but the more recent Care Act (Care Act, 2014) is arguably more relevant to the context of this research. The general purpose of the Care Act was to set out roles and responsibilities relating to social care in England but one late addition (clause 119) made by Health Secretary Jeremy Hunt and Health Minister Earl Howe has particular significance in the debate around public involvement in disinvestment decision making. The amendment made by Mr Hunt and Earl Howe sought to extend the powers of the ‘Trust Special Administrator’ (TSA). A TSA is an individual appointed by the Secretary of State or ‘Monitor’ to take over the day to day running of Trusts or Foundation Trusts which are deemed to be financially unsustainable in their current form, or are deemed to be at serious risk of failing to provide high quality services (UK Government, 2013). In returning organisations to financial balance and/or improving the quality of services the TSA’s role must, by definition, include some elements of disinvestment. Clause 119 aimed to extend the TSA’s remit beyond the trust within which they had been appointed so as to give them powers to re-configure services across a health economy, potentially making disinvestment decisions incorporating neighbouring organisations which are delivering high quality, sustainable services (O’Dowd, 2014). Crucially the clause aimed to make it possible for the TSA to take these decisions at just 40 days’ notice with agreement from the Secretary of 13  State for Health but only minimal opportunity for stakeholder (including the public, staff and patients) involvement (Eaton, 2014). Prior to Clause 119 the TSA at South London Health Care Trust had sought to relieve some of the financial pressure on the organisation by downgrading Emergency Department and Maternity Services at the neighbouring Lewisham Hospital (Pollock et al., 2013). Lewisham Hospital was part of the Lewisham and Greenwich NHS Trust which was financially solvent in its own right and deemed to be providing good quality care. Despite local outcry the TSA moved to enact his decision with minimal stakeholder involvement. Jeremy Hunt backed the decision to push forward with the disinvestment at Lewisham (despite the fact that it was part of a separate organisation) but he, and the TSA, were eventually defeated in two court cases which ruled the TSAs actions to be unlawful (Dyer, 2013). The disinvestment decisions taken at South London Health care and Lewisham were making national news headlines at the time when the empirical research was conducted. The decisions were mentioned regularly by participants during data collection and are therefore an important part of the context within which the research was carried out.  Having been defeated in court twice, Mr Hunt added Clause 119 as an amendment to the Care Act (2014) in an attempt to ensure that future decisions made by the TSA would be legally binding and to put the Health secretary’s powers to act across organisations beyond doubt (Dyer and Torjesen, 2013). In essence, Clause 119 would enable disinvestment decisions to be made across organisational 14  boundaries in the future without the requirement for significant stakeholder engagement. The Care Act was eventually passed in June 2014 but Clause 119 was ‘watered down’ somewhat following a Coalition rebellion and lobbying by campaign groups. The proposal passed into law made provision for Clinical Commissioning Groups to veto decisions which would require disinvestment in successful organisations in order to stabilise failing trusts (O’Dowd, 2014). The strength of the clause that was ascended as part of the act has yet to be tested in court but it seems unlikely to have resolved the fundamental questions over the extent of powers that the TSA should have in terms of disinvestment and the requirement (or otherwise) for them to involve local stakeholders in decision making. The fact that Clause 119 was inserted by the Secretary of State for Health after the empirical data for this research was collected goes to show that there is a need for further clarity over the ways in which disinvestment decisions should be taken and, in particular, what the role of local communities should be within that decision making process; the research detailed in this thesis directly addresses this theme. 1.8 Thesis Contents and Structure This thesis details the background to, methods and results of an in-depth literature review and two-stage empirical data collection seeking to answer the research questions;  Should the public be involved in disinvestment decision making? Why? 15   To what extent should the public be involved?   At what stage should they become involved?  What types of decision should the public be involved in? Empirical data collection took the form of a Q-Methodology study followed by a series of in-depth interviews. The participants in the research were health professionals working in front line clinical or middle-management roles within provider, commissioner or ‘other’ e.g. public health organisations in England. The initial research plan had been to compare and contrast the views of a random sample of the public with those health professionals that took part in the study, but the design was modified shortly after data collection for the Q-Methodology study had commenced. This alteration of the sampling and research design came about because of severe difficulties in recruiting a sufficiently large, representative sample of the public to participate. Representativeness was assessed with reference to the extent to which the sample of participants reflected the age, gender, ethnic background, socio-economic status and level of education of the wider local community (the city of Birmingham).  After several months of unsuccessful public recruitment attempts, the researcher opted to focus efforts on increasing the size and breadth of the NHS professional sample and to make this group the sole focus of the research. Analysis of the Q-Methodology data after 45 participants had taken part, and then again after 55 participants, showed that data saturation had been reached and that further 16  sampling would not enable additional significant factors to be uncovered; this demonstrated that a sufficiently diverse range of views and experiences had been accounted for in the sample. The decision to make NHS professionals the focus of the study is borne out by the findings presented later in the thesis.  The research focuses on disinvestment decisions i.e. decisions to remove funding from services, treatments and technologies, affecting their accessibility to patients, taken at either the service level or at the wider health economy level- there is less focus on patient level decision making or bedside rationing. The research is concerned with the role of the public as taxpayers (i.e. the funders of the NHS) and community decision makers (i.e. local citizens who take a view on the services that should and should not be provided in their area). The role of the patient does arise in the research findings but, as is discussed later in the thesis, patients are distinct members of the public with a distinct perspective on disinvestment and are not the key focus of this research.  This thesis consists of a further nine chapters following this introductory chapter. The title and a brief description of the contents of each of the chapters is given below.  1.8.1 Chapter Two- Disinvestment Decision Making Having outlined the global and UK national health contexts in the first chapter and detailed the requirement for priority setting and disinvestment, chapter two gives an introduction to some of the approaches that are used in practice to make these 17  decisions. The chapter details and critically evaluates a number of criteria and non-criteria based priority setting decision making processes including economic evaluation and Programme Budgeting and Marginal Analysis (PBMA), and introduces disinvestment as a significant area of research interest in its own right. Kahneman and Tversky’s (1979) Prospect Theory is used to conceptualise the key differences between disinvestment and the other aspects of priority setting. 1.8.2 Chapter Three- Stakeholders in Disinvestment Decision Making This second background chapter aims to build upon the previous chapter by discussing some of the ethical implications of priority setting and disinvestment decision making as well as highlighting the range of different interests amongst stakeholders in the decision making process. The chapter provides an introduction to the public as one of the more significant stakeholders and aims to analyse their role and interest in the decision making process. Several common approaches to public involvement espoused in the literature are critically analysed and are classified against Arnstein’s Ladder (1969) 1.8.3 Chapter Four- Literature Review This chapter details an in-depth review of the literature relating to public involvement in disinvestment and priority setting; its purpose is to uncover and critically analyse the most relevant knowledge, theory and research relating to the research questions. In addition to this, the review also seeks to highlight gaps in the literature and guide the subsequent direction of the study. The chapter begins by detailing the approach taken to identifying the relevant literature, including the 18  search terms and databases used, before the results/ outcomes of the literature search are detailed and the findings are synthesised. Findings from the literature review are presented in a narrative form with key themes grouped into a series of propositions relating to public involvement in disinvestment decision making.  1.8.4 Chapter Five- Methodology, Research Design and Sampling This chapter highlights the empirical evidence needed to bridge the knowledge gaps identified by the literature review and then introduces the constructionist/ interpretive research paradigm and the mixed methods approach used to collect the requisite empirical data. The applicability of constructionist/interpretive ontological and epistemological assumptions to the research questions is explored in depth as well as the implications of these assumptions for the data collection phase. 1.8.5 Chapter Six- Research Methods This chapter gives a detailed account of the steps taken within the data collection process. The chapter begins by introducing Q-Methodology as an approach to research before giving an in-depth description of the way that it was applied as the first stage of this mixed-methods project. The chapter then gives a comprehensive account of the semi-structured interviews that were carried out following the Q-Methodology study as the second stage of the mixed-methods design. 1.8.6 Chapter Seven- Results Part One- Whether and Why the Public Should be Involved in Disinvestment Decision Making This chapter is the first of two results chapters, it combines the findings from both 19  stages of the research to provide an answer to research question one- whether or not the public should be involved in disinvestment decision making and why. The first section of the chapter details the results of the Q-Methodology study, including giving details of the final sample of 55 participants, and the factors uncovered through the research. The second section details the make-up of the interview sample before using findings from the qualitative data to explore the motivations behind the perspectives uncovered in the Q-Methodology research. 1.8.7 Chapter Eight- Results Part Two- Extent and Timing of Public Involvement in Different Types of Disinvest