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Deciding whether to engage the public on health care issues
ORIGINAL ARTICLE
Deciding whether to engage the public on health care issues by Roger Chafe, Doreen Neville, Thomas Rathwell, and Raisa Deber
Roger Chafe, PhD, is a post-doctoral fellow in the Department of Health Policy, Management and Evaluation at the University of Toronto.
Doreen Neville, ScD, is an Associate Professor of Health Policy and Health Care Delivery in the Division of Community Health at Memorial University. .
Thomas Rathwell, PhD, is a Professor in the School of Health Services Administration at Dalhousie University.
Raisa Deber, PhD, is a Professor in the Department of Health Policy, Management and Evaluation at the University of Toronto.
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Abstract Health care decision-makers often face calls for greater public participation or see increasing public engagement as part of their organizational mandate. This article identifies six questions decision-makers must consider when deciding whether to formally engage the public or other stakeholders around a particular health care issue. These questions focus on (1) the clarity of the issue for public engagement, (2) the appropriateness of the issue for public engagement, (3) the extent to which there are viable options, (4) the role for the public, (5) whether the public likely want to be involved and (6) consideration of the expected advantages and disadvantages of public engagement. Résumé Les décideurs du milieu de la santé font souvent face à des demandes de plus grande participation du public ou voient l’accroissement de cette participation intégré à leur mandat. Le présent article repère six questions que les décideurs doivent envisager lorsqu’ils décident s’ils veulent faire participer officiellement le public ou d’autres intervenants à un enjeu donné dans le milieu de la santé. Ces questions portent sur (1) la clarté de l’enjeu visant la participation du public, (2) la pertinence de l’enjeu visant la participation du public, (3) la mesure des possibilités décisionnelles viables, (4) le rôle du public, (5) l’intérêt du public à participer et (6) l’évaluation des avantages et désavantages prévus de cet exercice de participation.
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ublicly funded health care organizations frequently are urged to incorporate greater public participation in a wide range of decision areas. Proponents have various, and sometimes contradictory, rationales in calling for increased public engagement. Some argue that health care programs can be improved by better incorporating user knowledge and preferences.1,2 Others claim that local communities should be more involved in deciding how limited resources are allocated within their region.3 Increased public participation, particularly in the governance of health care institutions, is seen as a way to ensure greater public accountability 4 and some health care organizations see it as part of their mandate to involve the public in their decision-making.5 Public engagement is also proposed as a means to empower a wide range of traditionally marginalized groups6,7 and as a key element in maintaining a well-functioning democracy.8 Some countries, particularly the United Kingdom, have legislated greater public involvement in the decision-making of most health care organizations.9,10 While there is extensive literature on public participation and its virtues, there is little direct guidance for decision-makers considering the reasons for and against engaging the public or other stakeholders on a particular health care issue. Who needs to be involved, that is, who legitimately constitutes the “public,” how much influence the process should have on the final decision, and the most appropriate method of public engagement should all be determined in structuring the engagement process.2 Before addressing these difficult questions, however, decision-makers need first to identify whether they should seek guidance from the wider public on the issue.
Healthcare Management FORUM Gestion des soins de santé – Fall/Automne 2008
DECIDING WHETHER TO ENGAGE THE PUBLIC ON HEALTH CARE ISSUES
There are both practical and normative reasons why a health care organization should be selective on which issues to engage the public. Practically, members of the public and community groups cannot be involved in every health care decision, nor do they want to be.11 Most community groups do not have the staff and/or resources to participate in every public engagement exercise to which they are asked to contribute, and there are real questions as to when such involvement is cost-effective for them. For health care organizations, a poorly conceived public engagement exercise can waste resources, tie up management time and seriously impair an institution’s relationships with stakeholder groups and the local community, sometimes for years.12 Even when committed to the goal of increasing public participation, health care organizations need to carefully determine for which issues it makes sense to seek public input. The normative reasons for selectiveness spring, in part, from the possible distinctions in what is meant by “the public.” An expansive view of this term includes all groups and individuals outside of an organization or its direct governance structure.13 This definition would thus include both engagement with stakeholders (e.g., organizations and individuals who are directly affected by the actions of the organization, including regular users of health care services, their families and those providing goods and services) and with the general public or citizens. There are reasons why a health care organization may want to engage each of these groups, but the terms and the appropriate topics for engagement vary depending on who is engaged. For example, there is an extensive literature on shared decision-making and the merits of involving patients/clients in decisions about their own care.14,15 Even for such individual choices, Deber et al. distinguish between “problem-solving” tasks (e.g., making a diagnosis), which require expertise but for which patient preferences are irrelevant and “decision-making” tasks, which may also require expertise, but require weighing individual preferences for various outcomes.16,17 Providers are increasingly recognizing the merit of explicitly involving patients/clients in these valueladen decision-making tasks, and failure to do so has even been described as “usurping patient prerogatives.”18 Indeed, in the area of mental health, patient empowerment is proposed as part of an effective treatment strategy.19,20 There are ethical questions about issues relating to the care of individual patients, and when it is appropriate to involve the general public or their representatives. Indeed, the public has indicated that they are reluctant to become involved in such matters.21 In this article, we present some initial questions decisionmakers need to consider in determining whether to conduct a public engagement exercise. Our discussion is based on the findings of a three-year research project entitled “Building a public dialogue framework for defining the medicare basket.”22 As part of this program of research, an annotated bibliography of Canadian experience with public engagement in health care governance was developed,23 an ethical analysis of the normative issues underlying public engagement in priority setting was completed, 50 key informant interviews were held with representatives of private health insurers and an environmen-
Table 1 Considerations when contemplating public engagement _________________________________________________________________ • Is there a clearly defined question for engagement? • Is the topic appropriate to public engagement? • Are there viable options from which to choose? • Is there a useful role for the public? • Does the public likely want to be involved? • Do the expected advantages of the exercise outweigh the disadvantages/costs? _________________________________________________________________
tal scan was conducted of international approaches to involve the public in coverage and resource allocation decisions. Four focus groups were conducted: two with representatives of community stakeholder groups and two with groups of senior health care decision-makers. The project team also consulted with experts in public engagement and a select number of decision-makers across the country. One of the project’s key findings is that while the public have a legitimate and useful role to play in health care decision-making, successful and meaningful public participation requires health care organizations to be fairly selective in the topics on which they engage the public. Selecting opportunities for public engagement The decision to engage outside groups around any issue is complex, involving a number of considerations. We accordingly break the question of whether or not to engage the public into six more basic, albeit interrelated, questions (see Table 1). We suggest that decision-makers should have positive answers to all six questions before they consider initiating a public engagement exercise. A clear question Decision-makers must be clear about and focused on the issue about which they are engaging the public. The subject of a participation exercise can be a broad issue of policy (e.g., determining the organization’s priorities) or a more specific matter (e.g., whether to introduce, enhance, reduce or de-list a particular service). The exercise can seek public input into several issues at the same time. Regardless, the organization should be able to describe clearly, in plain language, all of the decisions/issues to be addressed. Although this may seem like a simple task, at the very least it forces the organization’s management team to be explicit in their objectives for trying to engage the public. However, the actual engagement exercise must be flexible to allow for the possibility of the public raising new issues and to determine which of these new issues fit into the particular exercise, which will be dealt with in subsequent processes and which are inappropriate (either because they are outside the scope of the organization, and/or because they do not meet the criteria for public involvement). Achieving a balance is important. Ignoring issues that arise through the process is likely to convince participants that their views are not valued, but the exercise needs to be focused on the specific questions of concern. For example, if a health region wants to engage the public about whether or not to enact a Healthcare Management FORUM Gestion des soins de santé – Fall/Automne 2008
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Chafe, Neville, Rathwell, and Deber
program for increasing physical activity within the community, they should focus their engagement activities specifically on that topic and not let the process slide into a larger debate about how to address obesity. Clear questions can minimize, if not eliminate, these problems. An appropriate topic The second question to consider is whether the topic is appropriate for public engagement. While all health care decisions ultimately have some impact on the services to which the public have access, it is not always useful or appropriate for a health care organization to engage the public in all decisions. The organization should consider the likely impact of involving the public, the information that would need to be shared to initiate discussions (which may raise privacy concerns) and the ethical implications of public involvement. In particular, many important decisions by a health care organization relate to individual patient care. As noted above, while there may be value in discussing types of care in general, there appears to be consensus that under most circumstances it is neither appropriate nor desirable for the public to be involved in decisions pertaining to individual patients, even when the details are publicly known.24 Given the costs involved and the limited number of public participation exercises that the public, stakeholder groups and a health care organization can realistically undertake, we also suggest limiting public participation to significant issues, recognizing the difficulty of explicitly defining the magnitude of individual decisions. This would include both specific issues of significant concern to a community (e.g., contentious hospital closures, difficult coverage or resource allocation decisions) as well as broader topics dealing with the principles, factors, values or processes used by decision-makers across a wide range of cases.25 Viable options Decision-makers must then consider whether the issue could give rise to a number of viable options. Does the organization have the authority, resources and the political will to adopt the courses of action on the table? While the public can be asked to discuss any topic, meaningful participation is only possible when dealing with questions for which an organization has choices to make. Health care organizations are often practically, financially or legally limited in what they can do. For example, a small community hospital may be unable to offer tertiary services, even if the community so wished, due to limited expertise, budget, equipment, or number of patients. Provincial governments may constrain a health care organization’s actions. Strong opposition by providers and other powerful stakeholders may also limit changes that an organization can realistically adopt. If an organization has already determined a course of action, it is unwise and unfair to give participants the false sense that they are involved in the decision-making process. If the topics raised through public engagement are important, but beyond the scope of the organization, partnering with other bodies may be a viable option. 26
Healthcare Management FORUM Gestion des soins de santé – Fall/Automne 2008
A useful role for the public Some authors say that there is value in the very act of involving the public in the decision-making processes of public institutions.8,26 Even granting the wider civic value of public participation, health care decision-makers must consider the usefulness of engaging the public around a particular issue. What is the public's contribution and to what extent are they likely to succeed in making it? Involvement that does not produce action is likely to lead to disillusionment and be counterproductive. Although a technical field, health care does offer numerous opportunities for useful public involvement. Preferences about health care priorities, questions about value choices, information about population needs and the direction of future health care reform are ripe for public involvement and guidance.13,27 If the rationale for undertaking an engagement exercise is to help inform the final decision, decision-makers must consider how they will use public input in their final choice. The public wants to be involved Many public engagement exercises are in direct response to public demands for involvement. Nevertheless, the public have expressed some unwillingness to participate in certain types of health care decisions. Abelson et al. found that only a quarter of randomly selected members of the general public want to take full responsibility for health care decision-making. Lomas reports that less than 10% of the public want to be involved in making difficult funding decisions, particularly when those decisions result in service cuts.25 The public is often unwilling to participate because they feel ill-equipped to discuss certain issues. However, when it comes to decisions about the allocation of health care resources across program areas11 or broad policy direction for programs,28 they are often willing to participate. On a more local level, it may be obvious that there is sufficient public interest around a particular issue to warrant establishing some level of public engagement. The question of whether the public wants to be involved is directly related to how much influence the exercise is likely to have on the final decision. Public engagement involves different levels of empowerment, which is often determined by a organization’s rationale for involving the public and how the engagement process is structured.29 Often decision-making organizations have several rationales for involving the public and they must therefore recognize that there may be conflicts in structuring the process to achieve various goals. The organization must be prepared for trade-offs in achieving their goals. It is also important to note that not all rationales for involving the public will be equally attractive to possible participants. One quick way of testing the merit of conducting the exercise would be to ask the question: “If the public knew the organization’s true motivations for conducting this exercise and the likely impact of the engagement process on the final decision, would they still be willing to participate?” The advantages and disadvantages Last, but not least, decision-makers must consider the advantages and disadvantages of public engagement, includ-
DECIDING WHETHER TO ENGAGE THE PUBLIC ON HEALTH CARE ISSUES
ing the cost to both the organization and the public. Successful public participation often requires substantial commitment of time and resources on the part of the host organization and the participants.13,30 Certain groups will find it easier to participate than others and this may skew results. The number of people involved in the process, the geographic location of the exercise and the means of interacting with the public all affect the cost to the host organization. Other significant costs include informing the public about the exercise, educating them about the specific issue, hosting the exercise, analyzing and then communicating the results to participants. The benefits of public participation are not easily captured in monetary terms and may be hard to measure. As with any management function, however, decision-makers must consider whether the benefits outweigh the costs. Benefits can include improved community relations, the enhancement of people’s engagement with their community, more political efficacy, improved service delivery, increased patient/stakeholder satisfaction and greater support for the publicly funded system. Next steps If decision-makers are unable to affirmatively answer all six questions, they should avoid directly engaging the public around the issue or, at the very least, reconsider the focus of the engagement exercise. Once they are able to affirmatively answer all six questions, the next step is to consider the structure of the exercise. There are a number of methods for public engagement and all involve trade-offs in terms of how well the views represent the general public, how informed the participants are about the issue, the richness of the responses and the costs involved. The structure of the exercise influences both the outcomes and how participants view the process. A related concern is that not everyone is equally likely or able to participate. As the political scientist Schattschneider observed, “The pluralist chorus sings with an upper class accent”31 and there are many examples where participation does not result in representative decisions.27,32 To address the issues of representativeness, the host health care organization should consider covering the costs of participation, especially for those from economically disadvantaged groups or make special efforts to involve marginalized groups.8 There are also other important structural issues to consider, including (1) the timeline for the exercise, (2) the means by which the public will be contacted, (3) the means of communicating with the public throughout the process, (4) the type and extent of information to be communicated to the public, (5) the process for communicating the results and final decision of the exercise, and (6) how the exercise will be evaluated. Basket Grant Framework There are a number of frameworks that can assist organizations in developing public participation exercises,3,33 including the Basket Grant Framework, which the authors developed as part of the Building a Public Dialogue Framework for Defining the Medicare Basket project.33 Specifically, the Basket Grant Framework is designed to help decision-makers structure meaningful public engagement exercises relating to coverage
and resource allocation decisions, but it is likely to be useful to anyone planning a public participation exercise. It begins with a synopsis of key issues that should be considered in developing a public participation exercise (for example, who should be invited to participate and their level of involvement and how much decision-making control should be given to the process?). The synopsis also reviews issues directly related to coverage and resource allocation decisions. The second part of the framework describes the choices that must be made through the three phases of any public participation exercise: (1) setting goals, (2) structuring the process and (3) reporting the decision and evaluating the process. The framework is designed so that the organization’s rationale for involving the public shapes the structure of the public participation exercise. By outlining the main issues that must be considered, in a clear and orderly manner, the framework provides decisionmakers with a tool for the thoughtful selection and structuring of public engagement exercises. It also highlights the choices that must be made to ensure that the exercise meaningfully involves the public not only as consumers of the health care system, but also in a way that reflects the public’s role as the ultimate decision-making authority within the publicly funded health care system. Finally, the framework provides helpful checklists to enable decision-makers, during the planning process, to determine whether it is still appropriate to engage the public around the issue and whether the proposed structure is likely to achieve the organization’s goals in undertaking the public participation exercise. In a follow-up article, we will present the framework, including checklists, in more detail. Conclusion If the public are to play a meaningful role in improving the governance and delivery of health care, when and how to involve them is a very important consideration. The public have a legitimate and very useful role to play in the decisions of publicly funded health care institutions. However, to maximize the benefits of the exercise, decision-makers must be selective in the questions around which public participation is established. This paper provides guidance to health care decision-makers in determining whether or not it is appropriate to establish a formal public engagement exercise for a specific health care issue. Recognizing that a specific topic is worthy of public engagement is, however, only the first step. Successful public engagement depends on selecting appropriate opportunities for public participation and then developing a suitable process of engagement. Acknowledgments The Building a Public Dialogue Framework for Defining the Medicare Basket research team includes: Dr. Thomas Rathwell, Dalhousie University; Dr. Raisa Deber, University of Toronto; Dr. Doreen Neville, Memorial University; Dr. Nuala Kenny, Dalhousie University; Prof. Lawrence Nestman, Dalhousie University; Dr. Christine Joffres, Simon Fraser University; Dr. Roger Chafe, University of Toronto; Dr. Patricia Conrad, Canadian Health Services Research Foundation; Heather Chappell, Healthcare Management FORUM Gestion des soins de santé – Fall/Automne 2008
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University of Toronto; and Moses Batema, University of Toronto. Financial support for this project was provided by the Canadian Health Services Research Foundation, Canadian Institutes of Health Research, Newfoundland and Labrador Centre for Applied Health Research, Nova Scotia Health Research Foundation and Ontario Ministry of Health and Long-Term Care. References 1.
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Gray R, Fitch M, Greenberg M, Shapiro S. Consumer participation in cancer system planning. Journal of Palliative Care,1995;11(4):27-33. Gauvin F-P, Abelson J. Primer on public involvement. Prepared for Health Council of Canada;2006. [Accessed January 31,2008]. Available from: www.healthcouncilcanada.ca Murphy NJ. Citizen deliberation in setting health-care priorities. Health Expectations,2005;8(2):172-81. Transparency, participation, and accountability. (Editorial). Canadian HIV/AIDS Policy & Law Review,2003;8(1):5-6. Maloff B, Bilan D, Thurston W. Enhancing public input into decision making: Development of the Calgary Regional Health Authority Public Participation Framework. Family & Community Health,2000;23(1):66-78. Anderson JM. Empowering patients: Issues and strategies. Social Sciences & Medicine,1996;43(5):697-705. Higgins JW. Closer to home: The case for experiential participation in health reform. Canadian Journal of Public Health,1999;90(1):30-4. Abelson J, Eyles J. Public participation and citizen governance in the Canadian health system. In: Forest P-G, McIntosh T, Marchildon G, editors. Changing health care in Canada: The Romanow Papers: Volume 2 (pp. 279-311). Toronto,ON: University of Toronto Press;2004. Harrison S, Dowswell G, Milewa T. Guest editorial: Public and user involvement in the UK National Health Service. Health & Social Care in the Community,2002;10(2):63-6. Sang B. Choice, participation and accountability: Assessing the potential impact of legislation promoting patient and public involvement in health in the UK. Health Expectations,2004;7(3);187-90. Litva A, Coast J, Donovan J, Eyles J, Shepherd M, Tacchi J, et al. “The public is too subjective”: Public involvement at different levels of health-care decision making. Social Science & Medicine,2002;54(12):1825-37. Abelson J, Forest P-G, Casebeer A, Mackean G, Maloff B, Musto R, et al. Towards more meaningful, informed and effective public consultation. Canadian Health Services Research Foundation,2004. [Accessed January 31, 2008]. Available from: www.chsrf.ca Zerhouni, E. Enhancing public input and transparency in the National Institutes of Health Research priority-setting process. National Institutes of Health Director’s Council of Public Representatives; 2004. [Accessed July, 23, 2008]. Available from: copr.nih.gov Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. British Medical Journal,2007;(335):24-7. Coulter A. After Bristol: Putting patients at the centre. Quality and Safety in Healthcare, 2002.11;186-8.
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16. Deber RB, Kraetschmer N, Urowitz S, Sharpe N. Do people want to be autonomous patients? Preferred roles in treatment decision-making in several patient populations. Health Expectations,2007;10(3):248-58. 17. Deber RB, Kraetschmer N, Irvine J. What role do patients wish to play in treatment decision making? Archives of Internal Medicine,1996;156(13):1414-20. 18. Kassirer JP. Adding insult to injury. Usurping patients’ prerogatives. New England Journal of Medicine,1983;308(15):898-901. 19. Wilson S. Consumer empowerment in the mental health field. Canadian Journal of Community Mental Health,1996;15(2):6985. 20. Ross K. The emergence of stakeholder contributions. Canadian Journal of Community Mental Health,2000;19(2):156-61. 21. Abelson J, Lomas J, Eyles J, Birch S, Veenstra G. Does the community want devolved authority? Results of deliberative polling in Ontario. Canadian Medical Association Journal,1995;153(4):403-12. 22. Rathwell T, Deber R, Kenny N, Nestman L, Neville D, Conrad P, et al. Building a public dialogue framework for defining the medicare basket. Canadian Health Services Research Foundation,2006. [Accessed January 31, 2008]. Available from: www.chsrf.ca 23. Chafe R, Neville D, Rathwell T, Deber R, Kenny N, Nestman L. Annotated bibliography of Canadian public involvement in health care governance (1980-2007);2008. Available from: www.dal.ca 24. Veatch RM. Terri Schiavo, Son Hudson, and ‘nonbeneficial’ medical treatments. Health Affairs,2005;24 (4):976-9. 25. Lomas J. Reluctant rationers: Public input to health care priorities. Journal of Health Services Research and Policy,1997;2(2):103-11. 26. Tritter J, McCallum A. The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy,2006;76(2):15668. 27. Kenny N. What good is health care? Canadian Health Association Press;2002. 28. Deber R, Williams A. Policy, payment and participation: Longterm care reform in Ontario. Canadian Journal on Aging,1995;14(2):294-318. 29. Arnstein S. A ladder of citizen participation. Journal of the American Planning Association,1969;35(4):216-24. 30. Maxwell J, Rosell S, Forest P-G. Giving citizens a voice in health care policy in Canada. British Medical Journal,2003;326:1031-3. 31. Schattschneider EE. The semisovereign people: A realist’s view of democracy in America. New York: Holt, Rinehart and Winston; 1964. 32. Marmor T, Morone J. Representing consumer interests: Imbalanced markets, health planning and the HSAs. The Milbank Memorial Fund Quarterly, Health and Society,1980;58(1):12565. 33. Chafe R, Neville D, Rathwell T, Deber R, Kenny K, Nestman L, et al. A framework for involving the public in the medicare coverage decisions. Canadian Health Services Research Foundation,2007. [Accessed January 31, 2008]. Available from: http://schoolofhealthadministration.dal.ca
Deciding whether to engage the public on health care issues by Roger Chafe, Doreen Neville, Thomas Rathwell, and Raisa Deber
Roger Chafe, PhD, is a post-doctoral fellow in the Department of Health Policy, Management and Evaluation at the University of Toronto.
Doreen Neville, ScD, is an Associate Professor of Health Policy and Health Care Delivery in the Division of Community Health at Memorial University. .
Thomas Rathwell, PhD, is a Professor in the School of Health Services Administration at Dalhousie University.
Raisa Deber, PhD, is a Professor in the Department of Health Policy, Management and Evaluation at the University of Toronto.
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Abstract Health care decision-makers often face calls for greater public participation or see increasing public engagement as part of their organizational mandate. This article identifies six questions decision-makers must consider when deciding whether to formally engage the public or other stakeholders around a particular health care issue. These questions focus on (1) the clarity of the issue for public engagement, (2) the appropriateness of the issue for public engagement, (3) the extent to which there are viable options, (4) the role for the public, (5) whether the public likely want to be involved and (6) consideration of the expected advantages and disadvantages of public engagement. Résumé Les décideurs du milieu de la santé font souvent face à des demandes de plus grande participation du public ou voient l’accroissement de cette participation intégré à leur mandat. Le présent article repère six questions que les décideurs doivent envisager lorsqu’ils décident s’ils veulent faire participer officiellement le public ou d’autres intervenants à un enjeu donné dans le milieu de la santé. Ces questions portent sur (1) la clarté de l’enjeu visant la participation du public, (2) la pertinence de l’enjeu visant la participation du public, (3) la mesure des possibilités décisionnelles viables, (4) le rôle du public, (5) l’intérêt du public à participer et (6) l’évaluation des avantages et désavantages prévus de cet exercice de participation.
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ublicly funded health care organizations frequently are urged to incorporate greater public participation in a wide range of decision areas. Proponents have various, and sometimes contradictory, rationales in calling for increased public engagement. Some argue that health care programs can be improved by better incorporating user knowledge and preferences.1,2 Others claim that local communities should be more involved in deciding how limited resources are allocated within their region.3 Increased public participation, particularly in the governance of health care institutions, is seen as a way to ensure greater public accountability 4 and some health care organizations see it as part of their mandate to involve the public in their decision-making.5 Public engagement is also proposed as a means to empower a wide range of traditionally marginalized groups6,7 and as a key element in maintaining a well-functioning democracy.8 Some countries, particularly the United Kingdom, have legislated greater public involvement in the decision-making of most health care organizations.9,10 While there is extensive literature on public participation and its virtues, there is little direct guidance for decision-makers considering the reasons for and against engaging the public or other stakeholders on a particular health care issue. Who needs to be involved, that is, who legitimately constitutes the “public,” how much influence the process should have on the final decision, and the most appropriate method of public engagement should all be determined in structuring the engagement process.2 Before addressing these difficult questions, however, decision-makers need first to identify whether they should seek guidance from the wider public on the issue.
Healthcare Management FORUM Gestion des soins de santé – Fall/Automne 2008
DECIDING WHETHER TO ENGAGE THE PUBLIC ON HEALTH CARE ISSUES
There are both practical and normative reasons why a health care organization should be selective on which issues to engage the public. Practically, members of the public and community groups cannot be involved in every health care decision, nor do they want to be.11 Most community groups do not have the staff and/or resources to participate in every public engagement exercise to which they are asked to contribute, and there are real questions as to when such involvement is cost-effective for them. For health care organizations, a poorly conceived public engagement exercise can waste resources, tie up management time and seriously impair an institution’s relationships with stakeholder groups and the local community, sometimes for years.12 Even when committed to the goal of increasing public participation, health care organizations need to carefully determine for which issues it makes sense to seek public input. The normative reasons for selectiveness spring, in part, from the possible distinctions in what is meant by “the public.” An expansive view of this term includes all groups and individuals outside of an organization or its direct governance structure.13 This definition would thus include both engagement with stakeholders (e.g., organizations and individuals who are directly affected by the actions of the organization, including regular users of health care services, their families and those providing goods and services) and with the general public or citizens. There are reasons why a health care organization may want to engage each of these groups, but the terms and the appropriate topics for engagement vary depending on who is engaged. For example, there is an extensive literature on shared decision-making and the merits of involving patients/clients in decisions about their own care.14,15 Even for such individual choices, Deber et al. distinguish between “problem-solving” tasks (e.g., making a diagnosis), which require expertise but for which patient preferences are irrelevant and “decision-making” tasks, which may also require expertise, but require weighing individual preferences for various outcomes.16,17 Providers are increasingly recognizing the merit of explicitly involving patients/clients in these valueladen decision-making tasks, and failure to do so has even been described as “usurping patient prerogatives.”18 Indeed, in the area of mental health, patient empowerment is proposed as part of an effective treatment strategy.19,20 There are ethical questions about issues relating to the care of individual patients, and when it is appropriate to involve the general public or their representatives. Indeed, the public has indicated that they are reluctant to become involved in such matters.21 In this article, we present some initial questions decisionmakers need to consider in determining whether to conduct a public engagement exercise. Our discussion is based on the findings of a three-year research project entitled “Building a public dialogue framework for defining the medicare basket.”22 As part of this program of research, an annotated bibliography of Canadian experience with public engagement in health care governance was developed,23 an ethical analysis of the normative issues underlying public engagement in priority setting was completed, 50 key informant interviews were held with representatives of private health insurers and an environmen-
Table 1 Considerations when contemplating public engagement _________________________________________________________________ • Is there a clearly defined question for engagement? • Is the topic appropriate to public engagement? • Are there viable options from which to choose? • Is there a useful role for the public? • Does the public likely want to be involved? • Do the expected advantages of the exercise outweigh the disadvantages/costs? _________________________________________________________________
tal scan was conducted of international approaches to involve the public in coverage and resource allocation decisions. Four focus groups were conducted: two with representatives of community stakeholder groups and two with groups of senior health care decision-makers. The project team also consulted with experts in public engagement and a select number of decision-makers across the country. One of the project’s key findings is that while the public have a legitimate and useful role to play in health care decision-making, successful and meaningful public participation requires health care organizations to be fairly selective in the topics on which they engage the public. Selecting opportunities for public engagement The decision to engage outside groups around any issue is complex, involving a number of considerations. We accordingly break the question of whether or not to engage the public into six more basic, albeit interrelated, questions (see Table 1). We suggest that decision-makers should have positive answers to all six questions before they consider initiating a public engagement exercise. A clear question Decision-makers must be clear about and focused on the issue about which they are engaging the public. The subject of a participation exercise can be a broad issue of policy (e.g., determining the organization’s priorities) or a more specific matter (e.g., whether to introduce, enhance, reduce or de-list a particular service). The exercise can seek public input into several issues at the same time. Regardless, the organization should be able to describe clearly, in plain language, all of the decisions/issues to be addressed. Although this may seem like a simple task, at the very least it forces the organization’s management team to be explicit in their objectives for trying to engage the public. However, the actual engagement exercise must be flexible to allow for the possibility of the public raising new issues and to determine which of these new issues fit into the particular exercise, which will be dealt with in subsequent processes and which are inappropriate (either because they are outside the scope of the organization, and/or because they do not meet the criteria for public involvement). Achieving a balance is important. Ignoring issues that arise through the process is likely to convince participants that their views are not valued, but the exercise needs to be focused on the specific questions of concern. For example, if a health region wants to engage the public about whether or not to enact a Healthcare Management FORUM Gestion des soins de santé – Fall/Automne 2008
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program for increasing physical activity within the community, they should focus their engagement activities specifically on that topic and not let the process slide into a larger debate about how to address obesity. Clear questions can minimize, if not eliminate, these problems. An appropriate topic The second question to consider is whether the topic is appropriate for public engagement. While all health care decisions ultimately have some impact on the services to which the public have access, it is not always useful or appropriate for a health care organization to engage the public in all decisions. The organization should consider the likely impact of involving the public, the information that would need to be shared to initiate discussions (which may raise privacy concerns) and the ethical implications of public involvement. In particular, many important decisions by a health care organization relate to individual patient care. As noted above, while there may be value in discussing types of care in general, there appears to be consensus that under most circumstances it is neither appropriate nor desirable for the public to be involved in decisions pertaining to individual patients, even when the details are publicly known.24 Given the costs involved and the limited number of public participation exercises that the public, stakeholder groups and a health care organization can realistically undertake, we also suggest limiting public participation to significant issues, recognizing the difficulty of explicitly defining the magnitude of individual decisions. This would include both specific issues of significant concern to a community (e.g., contentious hospital closures, difficult coverage or resource allocation decisions) as well as broader topics dealing with the principles, factors, values or processes used by decision-makers across a wide range of cases.25 Viable options Decision-makers must then consider whether the issue could give rise to a number of viable options. Does the organization have the authority, resources and the political will to adopt the courses of action on the table? While the public can be asked to discuss any topic, meaningful participation is only possible when dealing with questions for which an organization has choices to make. Health care organizations are often practically, financially or legally limited in what they can do. For example, a small community hospital may be unable to offer tertiary services, even if the community so wished, due to limited expertise, budget, equipment, or number of patients. Provincial governments may constrain a health care organization’s actions. Strong opposition by providers and other powerful stakeholders may also limit changes that an organization can realistically adopt. If an organization has already determined a course of action, it is unwise and unfair to give participants the false sense that they are involved in the decision-making process. If the topics raised through public engagement are important, but beyond the scope of the organization, partnering with other bodies may be a viable option. 26
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A useful role for the public Some authors say that there is value in the very act of involving the public in the decision-making processes of public institutions.8,26 Even granting the wider civic value of public participation, health care decision-makers must consider the usefulness of engaging the public around a particular issue. What is the public's contribution and to what extent are they likely to succeed in making it? Involvement that does not produce action is likely to lead to disillusionment and be counterproductive. Although a technical field, health care does offer numerous opportunities for useful public involvement. Preferences about health care priorities, questions about value choices, information about population needs and the direction of future health care reform are ripe for public involvement and guidance.13,27 If the rationale for undertaking an engagement exercise is to help inform the final decision, decision-makers must consider how they will use public input in their final choice. The public wants to be involved Many public engagement exercises are in direct response to public demands for involvement. Nevertheless, the public have expressed some unwillingness to participate in certain types of health care decisions. Abelson et al. found that only a quarter of randomly selected members of the general public want to take full responsibility for health care decision-making. Lomas reports that less than 10% of the public want to be involved in making difficult funding decisions, particularly when those decisions result in service cuts.25 The public is often unwilling to participate because they feel ill-equipped to discuss certain issues. However, when it comes to decisions about the allocation of health care resources across program areas11 or broad policy direction for programs,28 they are often willing to participate. On a more local level, it may be obvious that there is sufficient public interest around a particular issue to warrant establishing some level of public engagement. The question of whether the public wants to be involved is directly related to how much influence the exercise is likely to have on the final decision. Public engagement involves different levels of empowerment, which is often determined by a organization’s rationale for involving the public and how the engagement process is structured.29 Often decision-making organizations have several rationales for involving the public and they must therefore recognize that there may be conflicts in structuring the process to achieve various goals. The organization must be prepared for trade-offs in achieving their goals. It is also important to note that not all rationales for involving the public will be equally attractive to possible participants. One quick way of testing the merit of conducting the exercise would be to ask the question: “If the public knew the organization’s true motivations for conducting this exercise and the likely impact of the engagement process on the final decision, would they still be willing to participate?” The advantages and disadvantages Last, but not least, decision-makers must consider the advantages and disadvantages of public engagement, includ-
DECIDING WHETHER TO ENGAGE THE PUBLIC ON HEALTH CARE ISSUES
ing the cost to both the organization and the public. Successful public participation often requires substantial commitment of time and resources on the part of the host organization and the participants.13,30 Certain groups will find it easier to participate than others and this may skew results. The number of people involved in the process, the geographic location of the exercise and the means of interacting with the public all affect the cost to the host organization. Other significant costs include informing the public about the exercise, educating them about the specific issue, hosting the exercise, analyzing and then communicating the results to participants. The benefits of public participation are not easily captured in monetary terms and may be hard to measure. As with any management function, however, decision-makers must consider whether the benefits outweigh the costs. Benefits can include improved community relations, the enhancement of people’s engagement with their community, more political efficacy, improved service delivery, increased patient/stakeholder satisfaction and greater support for the publicly funded system. Next steps If decision-makers are unable to affirmatively answer all six questions, they should avoid directly engaging the public around the issue or, at the very least, reconsider the focus of the engagement exercise. Once they are able to affirmatively answer all six questions, the next step is to consider the structure of the exercise. There are a number of methods for public engagement and all involve trade-offs in terms of how well the views represent the general public, how informed the participants are about the issue, the richness of the responses and the costs involved. The structure of the exercise influences both the outcomes and how participants view the process. A related concern is that not everyone is equally likely or able to participate. As the political scientist Schattschneider observed, “The pluralist chorus sings with an upper class accent”31 and there are many examples where participation does not result in representative decisions.27,32 To address the issues of representativeness, the host health care organization should consider covering the costs of participation, especially for those from economically disadvantaged groups or make special efforts to involve marginalized groups.8 There are also other important structural issues to consider, including (1) the timeline for the exercise, (2) the means by which the public will be contacted, (3) the means of communicating with the public throughout the process, (4) the type and extent of information to be communicated to the public, (5) the process for communicating the results and final decision of the exercise, and (6) how the exercise will be evaluated. Basket Grant Framework There are a number of frameworks that can assist organizations in developing public participation exercises,3,33 including the Basket Grant Framework, which the authors developed as part of the Building a Public Dialogue Framework for Defining the Medicare Basket project.33 Specifically, the Basket Grant Framework is designed to help decision-makers structure meaningful public engagement exercises relating to coverage
and resource allocation decisions, but it is likely to be useful to anyone planning a public participation exercise. It begins with a synopsis of key issues that should be considered in developing a public participation exercise (for example, who should be invited to participate and their level of involvement and how much decision-making control should be given to the process?). The synopsis also reviews issues directly related to coverage and resource allocation decisions. The second part of the framework describes the choices that must be made through the three phases of any public participation exercise: (1) setting goals, (2) structuring the process and (3) reporting the decision and evaluating the process. The framework is designed so that the organization’s rationale for involving the public shapes the structure of the public participation exercise. By outlining the main issues that must be considered, in a clear and orderly manner, the framework provides decisionmakers with a tool for the thoughtful selection and structuring of public engagement exercises. It also highlights the choices that must be made to ensure that the exercise meaningfully involves the public not only as consumers of the health care system, but also in a way that reflects the public’s role as the ultimate decision-making authority within the publicly funded health care system. Finally, the framework provides helpful checklists to enable decision-makers, during the planning process, to determine whether it is still appropriate to engage the public around the issue and whether the proposed structure is likely to achieve the organization’s goals in undertaking the public participation exercise. In a follow-up article, we will present the framework, including checklists, in more detail. Conclusion If the public are to play a meaningful role in improving the governance and delivery of health care, when and how to involve them is a very important consideration. The public have a legitimate and very useful role to play in the decisions of publicly funded health care institutions. However, to maximize the benefits of the exercise, decision-makers must be selective in the questions around which public participation is established. This paper provides guidance to health care decision-makers in determining whether or not it is appropriate to establish a formal public engagement exercise for a specific health care issue. Recognizing that a specific topic is worthy of public engagement is, however, only the first step. Successful public engagement depends on selecting appropriate opportunities for public participation and then developing a suitable process of engagement. Acknowledgments The Building a Public Dialogue Framework for Defining the Medicare Basket research team includes: Dr. Thomas Rathwell, Dalhousie University; Dr. Raisa Deber, University of Toronto; Dr. Doreen Neville, Memorial University; Dr. Nuala Kenny, Dalhousie University; Prof. Lawrence Nestman, Dalhousie University; Dr. Christine Joffres, Simon Fraser University; Dr. Roger Chafe, University of Toronto; Dr. Patricia Conrad, Canadian Health Services Research Foundation; Heather Chappell, Healthcare Management FORUM Gestion des soins de santé – Fall/Automne 2008
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University of Toronto; and Moses Batema, University of Toronto. Financial support for this project was provided by the Canadian Health Services Research Foundation, Canadian Institutes of Health Research, Newfoundland and Labrador Centre for Applied Health Research, Nova Scotia Health Research Foundation and Ontario Ministry of Health and Long-Term Care. References 1.
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