Improving equitable access to health care through increasing patient and public involvement in prioritisation decisions

Citation

Kieslich, K., Littlejohns, P. and Weale, A. (2016), "Improving equitable access to health care through increasing patient and public involvement in prioritisation decisions", Journal of Health Organization and Management, Vol. 30 No. 5. https://doi.org/10.1108/JHOM-06-2016-0120

Improving equitable access to health care through increasing patient and public involvement in prioritisation decisions

Article Type: Guest editorial From: Journal of Health Organization and Management, Volume 30, Issue 5.

Universal health care is now a common aspiration across the world. In Asia countries like South Korea and Thailand have laid a path to universal coverage, while China seeks to ascertain how it can meet the health care needs of a population of over 1.3 billion people. In Latin America, post-authoritarian constitutions wrestle with the problem of how feasibly to achieve the goal of ensuring the right to health contained in their democratic constitutions. In Africa, decision makers seek to cope with extending health care to poor rural communities and excluded societal groups. In Europe, Australasia and Canada the demands of ageing populations and high-cost pharmaceuticals challenge policy makers to ensure cost-effective delivery of care. Even in the USA, for so long the outlier among high-income countries in its neglect of universal health care, decision makers are working out the implications of increasing the number of citizens with health insurance through the Affordable Care Act.

Priority setting is present in all of these cases, whether explicitly in institutions like health technology assessment agencies, or implicitly in the non-decisions through which choices are made about which interventions receive priority, and in which priorities exist in the privileges of the status quo or the hauling and pulling of interest groups, professional bodies and political partisans. Fairness in resource allocation will often require that existing allocations of resources are reviewed and in some instances reformed. It always requires scrutiny of the processes and outcomes associated with resource allocation to avoid arbitrary, bias, or inequitable decisions. But how is this to be done?

In recent years many policy makers have turned to public participation as an important dimension of priority setting in health policy to achieve fairer or more equitable outcomes. Underlining this “participation turn” (Hunter et al., 2016) is the idea that the engagement of large parts of society or affected populations will help mitigate against decisions that result in unfair resource allocation. Few issues of resource allocation are simple and the legitimacy of policy solutions will often require processes of consultation and engagements with various publics. Institutional innovations, like citizen juries or deliberative polls, have provided policy makers and public managers with new instruments of consultation and engagement. However, in some countries, public participation emerges by processes of political contestation and demand. So, in some countries participation is granted; in others it is seized.

The purpose of this special issue of the Journal of Health Organization and Management is to bring together the experience of different countries in relation to these issues. The papers originate in a week-long workshop held at the Brocher Foundation between 9 and 13 November 2015, which brought together participants from 13 countries to compare and contrast the role of public participation and priority setting. Country profiles compiled according to a standard protocol were presented, and analytical questions about public participation – its meaning, role and effectiveness – discussed. The result has been a collective achievement built upon the collaborative efforts of all those present at the workshop. We believe that the results challenge easy over-generalisations from too limited a range of cases in a very small number of largely high income countries.

In the opening paper Weale and others (2016) set the analytical scene by discussing the definition, scope and purposes of public participation in priority setting. They note that it is not easy to come up with an adequate definition of participation, since it is used to cover a wide variety of practices, from bedside shared decision making about the treatment of individual patients to public representatives involved in national agencies that set priorities. In the context of priority setting, they define the relevant form of participation as being necessarily collective, involving decisions on whole groups of people. They also insist on the importance of including in public participation not only the institutionalized forms initiated by policy makers but also the contestatory forms – protests, demonstrations and the like – undertaken by citizens who feel excluded from otherwise closed policy processes. Whether decisions include overall levels of funding, the principles of service coverage or the definitions of eligibility for treatment, public participation, in all its forms, is intimately related to the quest for policy legitimacy.

In their paper on patterns of public participation, Slutsky et al. (2016) bring together the empirical evidence on the role of public participation in priority setting from 12 different countries. They provide summary data on the way in which different systems are organised but they also set this empirical data in the context of an analysis of how different forms of participation relate to the role that is assigned to the public in decision making. In particular, they suggest that where public representatives lack a meaningful role in shaping the policy agenda, public participation is likely to take a contestatory form.

Kieslich et al. (2016) examine these dynamics in relation to a particular priority setting issue, the case of new, highly effective but also very expensive direct-acting antiviral medicines in the treatment of hepatitis C. New hepatitis C medicines underline the need to balance considerations of innovation, clinical evidence, budget impact and equity in health priority setting. Kieslich et al. (2016) examine the contribution that public participation has made in balancing between these issues in a number of countries. Rather than alleviating tensions between the relevant considerations that bear on priority setting decisions in the case of hepatitis C medicines, Kieslich et al. argue that the role of public participation in such cases can be thought of as contributing to the future policy agenda by raising attention to issues, such as the balance between innovation and budget impact, that need to be addressed by policy makers. Whether this contribution materializes of course depends on the responsiveness of policy makers and on the policy windows that are available in a given context.

In a paper using theoretical insights to reflect upon the empirical material, Weale (2016) highlights two ways of thinking about participation in modern democratic theory, the deliberative and the agonistic. He notes that deliberative democratic theory has been influential among those who have advocated public participation through new forms of involvement, particularly through the emphasis that deliberative theory places on the securing of legitimacy through open and inclusive dialogue. However, he also notes that the principles of deliberative democracy may be less suited to providing insight about participation in closed systems where contestatory participation is the norm, and he suggests that agonistic theories of democracy may provide better understanding. In particular, agonistic theories highlight the extent to which priority setting decisions are always implicitly exclusionary, whether in the shaping of the policy agenda or the coverage of populations and interventions.

In the concluding paper Hunter et al. (2016) note that, although it is a political imperative to invoke public participation as the cure for the legitimacy ills of priority setting processes, central questions remain about the role and place of such participation. In particular, given how little we understand about the conditions under which public participation is effective and taken seriously by policy makers, questions need to be asked about the incentives that health managers have for involving the public and the seriousness with which they take such participation. Who guards the public interest in a world of only partially effective participation? And, in such a world, how can public legitimacy for hard priority setting decisions be secured? These questions are both questions of management and questions of research.

Acknowledgements

The editors should like to take this opportunity of thanking the Brocher Foundation for their generous support and their hosting of the workshop on which these papers are based in the delightful setting on the shore of Lake Léman. The editors should also like to thank the nine referees for their splendid reports on the different papers and for their suggestions for improvements. The editors also thank Alexandra Melaugh for her valuable research assistance. Finally, the data underlying the analysis is available in the form of the PDF versions of the slides given during the presentations of the workshop at: www.clahrc-southlondon.nihr.ac.uk/public-health

References

Hunter, D.J., Kieslich, K., Littlejohns, P., Staniszewska, S., Tumilty, E., Weale, A. and Williams, I. (2016), “Public involvement in health priority setting: future challenges for policy, research and society”, Journal of Health Organization and Management, Vol. 30 No. 5, pp. 796-808

Kieslich, K., Ahn, J., Badano, G., Chalkidou, K., Cubillos, L., Hauegen, R.C., Henshall, C., Krubiner, C., Littlejohns, P., Lu, L., Pearson, S., Rid, A., Whitty, J.A. and Wilson, J. (2016), “Public participation in decision-making on the coverage of new antivirals for hepatitis C”, Journal of Health Organization and Management, Vol. 30 No. 5, pp. 769-785

Slutsky, J., Tumilty, E., Max, C., Lu, L., Tantivess, S., Hauegen, R.C., Whitty, J.A., Weale, A., Pearson, S., Tugendhaft, A., Wang, H., Staniszewska, S., Weerasuriya, K., Ahn, J. and Cubillos, L. (2016), “Patterns of public participation: opportunity structures and mobilization from a cross-national perspective”, Journal of Health Organization and Management, Vol. 30 No. 5, pp. 751-768

Weale, A. (2016), “Between consensus and contestation”, Journal of Health Organization and Management, Vol. 30 No. 5, pp. 786-795

Weale, A., Kieslich, K., Littlejohns, P., Tugendhaft, A., Tumilty, E. and Whitty, J.A. (2016), “Introduction: priority setting, equitable access and public involvement in health care”, Journal of Health Organization and Management, Vol. 30 No. 5, pp. 736-750

About the Guest Editors

Dr Katharina Kieslich is a Research Associate at the Department of Primary Care and Public Health Sciences at King’s College London (KCL). Her research interests include the politics of health priority-setting and resource allocation, public and patient involvement (PPI) in priority-setting, fairness of decision-making processes in health, social values in health prioritisation, health technology assessment and comparative health policy. Katharina is currently working on a research project testing the accountability for reasonableness framework in the context of clinical commissioning groups (CCGs) in England. This is funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London. She holds a PhD in Political Science from the University College London (UCL). Katharina is a Member of the KCL and UCL collaboration on social values in health priority setting.

Peter Littlejohns is a Professor of Public Health, King’s College University of London and Honorary Consultant to Guy’s and St Thomas’ NHS Foundation Trust. He is also the Deputy Director of the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care South London leading on the Public Health Theme. From 1999 to 2012 he was the founding Clinical and Public Health Director of the National Institute for Health and Care Excellence. He left the Institute to establish an international multidisciplinary collaboration which undertakes research in how to prioritise health care in a fair and equitable way.

Albert Weale is a Professor of Political Theory and Public Policy at the University College London. His research and publications have been concentrated on issues of political theory and public policy, especially the theory of justice and the theory of democracy, health policy and comparative environmental policy. Between 2009 and 2012 he held an ESRC Professorial Fellowship working on modern social contract theory and its relationship to deliberative theories of democracy, two sets of ideas that he thinks have widespread implications for our understanding of public policy. In 1993 he became a Council nominated Fellow of the Royal Society of Arts. In 1998 he became a Fellow of the British Academy, serving as one of its Vice-Presidents, with special responsibility for public policy, between 2007 and 2012. He was awarded a CBE for services to Political Science in 2013.

About the authors

Dr Jeonghoon Ahn is an Associate Professor at the Department of Health Management at the Ewha Womans University in Seoul. Before joining the university, he was a Senior Research Fellow and Executive Director at the National Evidence-based Healthcare Collaborating Agency (NECA), a health technology assessment agency in Korea. Dr Ahn contributed to found a regional Health Technology Assessment Agency network called the HTAsiaLink (www.htasialink.org) and served on the board of the International Network of Agencies for Health Technology Assessment (INAHTA) and the Health Technology Assessment International (HTAi) as the Director.

Dr Gabriele Badano is a Postdoctoral Researcher at the Centre for Research in the Arts, Social Sciences and Humanities and a Fellow of Girton College at the University of Cambridge. He has a wide range of research interests in ethics and political philosophy. His current work mainly focuses on the philosophical aspects of the use of quantitative measures in health policy.

Dr Kalipso Chalkidou is the Founding Director of NICE International, supporting governments reach Universal Health Coverage through better resource allocation decisions. NICE International is leading on the international Decision Support Initiative, a global network of practitioners and researchers, supported by the Bill and Melinda Gates Foundation and the United Kingdom’s Department for International Development (DFID), working toward better decisions for better health in a number of low and middle income countries around the world. She has an MD (Athens University) and PhD (University of Newcastle) and has worked at NICE for over ten years. In 2007/2008 she spent a year at the Johns Hopkins University as a Harkness Fellow, working on pharmaceutical pricing and comparative effectiveness research.

Dr Leonardo Cubillos is a Colombian Medical Doctor and Policy Maker with over 15 years of experience in medicine, health insurance and human rights in Latin America, India and Africa. He is the Former Director General of Insurance at the Ministry of Health of Colombia and former Senior Health Specialist at the World Bank. He is currently an Adult Psychiatry Resident at the Dartmouth Medical School where he also supports wider teaching and service delivery research efforts.

Dr Renata Curi Hauegen is a Brazilian Lawyer at the Oswaldo Cruz Foundation (Fiocruz), an institution affiliated with the Ministry of Health of Brazil. She is in charge both of the legal department and the business and contracts area. Renata joined the Center for Technological Development in Health (CDTS/Fiocruz) in 2009 as the Head of the Business and Contracts Department, responsible for the partnerships with the private and public sectors, both at the national and international level, aiming to develop health care solutions to develop public policies in health care. She holds a PhD in Public Policy from the Federal University of Rio de Janeiro.

Dr Chris Henshall works as an Independent Consultant in health, research and innovation for governments, not-for-profit bodies and life sciences companies around the world. He was the first President of Health Technology Assessment International (HTAi) and Founder of the HTAi Policy Forum which he has chaired from 2004-2007 to 2010-2016. He has held a number of senior roles in the British Civil Service and universities.

Professor David Hunter graduated in Political Science from the University of Edinburgh, He is a Professor of Health Policy and Management, Durham University and Director of the Centre for Public Policy and Health (CPPH), School of Medicine, Pharmacy and Health. He is the Non-executive Director of the National Institute for Health and Care Excellence (NICE). Professor David also advises WHO Regional Office for Europe. CPPH is a WHO Collaborating Centre on Complex Health Systems Research, Knowledge and Action.

Dr Carleigh Krubiner is a Research Scholar and Associate Faculty Member at the Berman Institute of Bioethics at the Johns Hopkins University. Carleigh’s recent work focuses on ethics and equity in priority-setting for health, incentives for health promotion, and the equitable inclusion of pregnant women in biomedical research relevant to their health needs. Carleigh holds a PhD in Bioethics and Health Policy from the Johns Hopkins Bloomberg School of Public Health.

Dr Lanting Lu is an Associate Professor in Health Policy and Management, School of Public Administration and Policy at the Renmin University of China and the Director Assistant of the Health Reform and Development Center at the Renmin University of China. Her research interests lie in a wide range of topics in health policy, including health reform, economic evaluations of health technologies, health management and decision-analytic modelling. Her current research projects include predicting the social and economic burden of non-communicable diseases in China and exploring the governance towards “Health Nation”; integrating HTA into health policy making in China; and evaluating the newly reformed tiered health service delivery system in China.

Catherine Max is an Independent Consultant with over 25 years governance and management experience in high profile public and voluntary sector organisations. She provides policy, strategy and user involvement advice to government, NHS and charities – with a particular focus on environmental sustainability and reducing health inequalities. As a Member of the UCL/KCL Social Values in Health Priority Setting Group, she contributed to the NICE review of its social value principles and has also facilitated Citizens Council deliberations on this subject. Catherine is the Lay Chair of NHS England’s Individual Funding Requests Panel and was appointed the first Lay Member of the Research and Grants Committee of the Association of Anaesthetists of Great Britain and Ireland (AAGBI).

Dr Steven Pearson is the Founder and President of the Institute for Clinical and Economic Review, an independent not-for-profit research institute that performs evidence reviews of health care interventions. He is also a Visiting Scientist in the Department of Bioethics at the National Institutes of Health in the USA, and a Lecturer in Population Medicine at the Harvard Medical School.

Dr Annette Rid is a Senior Lecturer in Bioethics and Society and Director of Postgraduate Taught Studies in the Department of Social Science, Health & Medicine at the King’s College London. Dr Annette has published widely on research ethics, clinical ethics and justice in health and health care. She has served as an Advisor, among others, for the World Health Organization, the Council for International Organizations of Medical Sciences and the Swiss Ministry of Health.

Jean R. Slutsky is the Chief Engagement and Dissemination Officer at the Patient-Centered Outcomes Research Institute (PCORI), USA. She leads PCORI’s Engagement Program and growing dissemination and implementation planning efforts. She also serves as the Director of PCORI’s Communication and Dissemination Research Program. Before joining PCORI, Slutsky directed the Center for Outcomes and Evidence at the Agency for Healthcare Research and Quality, where she conceived and implemented the Effective Health Care program. Jean is particularly interested in pragmatic user-driven research and its implementation into healthcare decision making.

Dr Sophie Staniszewska leads the Patient and Public Involvement (PPI) and Experiences of Care Programme at the RCN Research Institute, Warwick Medical School, University of Warwick. Sophie is a Visiting Professor at London Southbank University and Co-Editor in Chief of Research Involvement and Engagement.

Dr Sripen Tantivess is a Senior Researcher at the Health Intervention and Technology Assessment Program (HITAP), Ministry of Public Health, Thailand. She is a Pharmacist by training, and received a Doctoral Degree in Public Health and Health Policy from the London School of Hygiene and Tropical Medicine. Her research areas include public policy analysis, health technology assessment and program evaluation.

Aviva Tugendhaft is the Deputy Director of PRICELESS SA (Priority Cost Effective Lessons for System Strengthening) based at the University of the Witwatersrand School of Public Health in South Africa. She is involved in all research activities by the unit, which focuses on cost effective interventions for health. Aviva is also pursuing a PhD on applying tools to engage the public in priority setting for health in SA.

Emma Tumilty is currently completing her PhD in Bioethics exploring how evidence-based medicine and decision making affect health inequity, while working as an Assistant Research Fellow on a Health Research Council New Zealand project addressing the health needs of people with severe COPD. She sits on the New Zealand Ethics Committee and is a Member of both the Australasian Association of Bioethics and Health Law, as well as the Feminist Approaches to Bioethics Network.

Professor Hufeng Wang is the Founding Director of the Health Reform and Development Center at the Renmin University of China, where he is also a Professor in the Department of Health Policy and Management in the School of Public Administration and Policy. He is a Member of the editorial board of several Chinese health journals and in 2014 he was voted by the readers of the “China Health” magazine as one of the ten excellent people in the news in 2013 on the topic of “promoting health care reform and health services for people”, which was organised by the National Health and Family Planning Commission. In 2015 he was commissioned as Consultant for Health Care Reform by the State Council.

Dr Krisantha Weerasuriya is a Sri Lankan Clinical Pharmacologist who has had many hats in the area at the National, Regional and International levels, in academia, regulatory and multinational organisations. He is now interested in advancing universal health care in middle and low income countries.

Professor Jennifer A. Whitty is a Health Economist with a professional background in pharmacy. She leads a program of applied health economics and outcomes research with a particular focus on evaluating patient and public preferences, choices and values around health outcomes and services.

Dr Iestyn Williams is a Reader in Health Policy and Management at the University of Birmingham. His research interests include priority setting, decommissioning and decision making in health care. He is currently secretary for the International Society for Priorities in Health, and the Director of Research at the Health Services Management Centre at the University of Birmingham.

Dr James Wilson is a Senior Lecturer in Philosophy at the UCL, where he is also the Vice-Dean (Interdisciplinarity) for Arts and Humanities, and the Co-Director of the Health Humanities Centre. His research integrates philosophy with other relevant disciplines, such as epidemiology, economics and political theory, to explore conceptual and practical challenges in the sustainable and equitable improvement of human wellbeing. He is an Associate Editor of Public Health Ethics, and a Member of the National Data Guardian’s panel.