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A framework for involving the public in health care coverage and resource allocation decisions
FEATURE ARTICLE
A framework for involving the public in health care coverage and resource allocation decisions by Roger Chafe, Doreen Neville, Thomas Rathwell, and Raisa Deber Roger Chafe, PhD, is a post-doctoral fellow at Cancer Care Ontario and 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 Coverage and resource allocation decisions are a very important area for public engagement because of their direct impact on the public’s access to care and because the affected services are publicly funded. We present a framework that guides decision-makers through key questions they must address when deciding on, structuring, evaluating and disseminating the results of public engagement exercises, particularly as they relate to coverage and resource allocation decisions. The framework will enable decision-makers to better conduct viable and meaningful citizen engagement around these issues.
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n our article in the fall edition of FORUM, we presented decisionmakers with some initial points to consider when deciding whether to engage the public about a particular issue.1 We also introduced a framework developed by the Basket Grant Research team,2 which guides decision-makers through key questions they must address when deciding on, structuring, evaluating and disseminating the results of public engagement exercises. In this article, we present the framework in detail. The framework is designed to assist health care decision-makers in government, regional health authorities or other organizations in undertaking successful and meaningful public engagement. Although the framework would likely be useful in structuring any public engagement exercise, it is specifically designed to help structure public participation around coverage and resource allocation decisions. As noted in the companion article, “public” can refer to various combinations of the general public (in their roles as citizens, taxpayers and potential care recipients) and those actually receiving services; views of the legitimate role for the general public vary considerably. Resource allocation decisions can be categorized broadly as decisions that determine resources directed to different parts of the health care system. Examples include whether or not to expand an existing service or to redirect resources between program areas. Coverage decisions are closely related to resource allocation in that they are decisions about whether or not a service or treatment is paid for by the public system, for which populations and/or under what circumstances. Coverage and resource allocation decisions for publicly funded health care services are a particularly important area for the public.3 They are also often difficult for decision-makers to make without outside consultation. One reason for this difficulty is the absence of clear legislative guidance about how these decisions should be made. For example, the Canada Health Act requires that all medically necessary hospital and physician services be publicly financed, but it is silent on coverage for such rapidly growing out-of-hospital services as home care, rehabilitation and pharmaceuticals. Provinces are able to insure these services, but are not required to. Even within the traditional hospital and physician sectors, each province has the power to define what is deemed to be a “medically necessary” service, resulting in considerable
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A FRAMEWORK FOR INVOLVING THE PUBLIC IN HEALTH CARE COVERAGE AND RESOURCE ALLOCATION DECISIONS
variation in access to and provision of services from province to province.4 Choosing to provide coverage and resources for some involves the opportunity cost of not providing something to other patients, so that these decisions always involve winners and losers. Such decisions cannot be determined only according to the evidence; they require a balancing of stakeholder interests and appeals to societal values.5 Finally, with greater public and media focus on these types of decisions, the public is increasingly asking to be more directly involved in determining how these decisions get made.6,7 The framework is designed to encourage meaningful citizen engagement around these issues.8 Meaningful citizen engagement is more than including the public only when it is useful to decision-makers. It requires involving the public in a way that recognizes and respects them not just as users of the health care system (for example, as consumers), but also as citizens with ultimate authority for making health care decisions. Meaningful citizen engagement requires some degree of dialogue between the participants and the decision-making organization9 and that the public participation exercise has some influence on the final decision. Methods The framework is one of the main outputs of a three-year program of research examining public engagement and health resource allocation.10 This program had four main components: (1) an environmental scan of attempts to involve the public in coverage and resource allocation decisions internationally; (2) a systematic review of Canadian experience with public engagement in health care governance;11 (3) an ethical analysis of normative issues involved in priority setting; and (4) a review of private insurance plans’ views on coverage and resource allocation within the public system. A draft of the framework was reviewed by four focus groups: two consisting of representatives of community stakeholder groups and two comprising senior health care decision-makers. In addition, the framework was reviewed individually by a number of experts in public engagement and a select number of decisionmakers who provided helpful and insightful feedback on its application and utility. The basic structure of the public engagement framework The framework is not a prescription for how public participation exercises should be structured. Rather, it guides decision-makers through a series of fundamental choices they must make in structuring any effective and meaningful participation exercise tailored to their own context. The framework comprises three inter-related phases (see Table 1). Each phase shows the steps decision-makers must take in determining whether and how to engage the public. The phases are organized so that decisions about the public participation exercise early on help inform subsequent decisions. The first phase focuses on establishing goals for the public participation exercise and confirming that the exercise is possible and relevant to the decision/issue at hand. The second phase deals with designing the structure of the public participation
TABLE 1 Framework overview Phase 1: Step 1: Step 2: Step 3:
Establish Goals Identify the decision question Clarify the rationale for involving the public Confirm the decision to engage the public
Phase 2:
Structure the Exercise
Step 4: Step 5: Step 6: Step 7: Step 8: Phase 3: Step 9: Step 10:
Specify the task the public will be asked to undertake Confirm the desired level of public involvement Determine the timing of the public participation exercise within the decision-making process Select participants Finalize the structure Evaluate the Exercise and Communicate Results Evaluate the participation exercise Disseminate findings
exercise while the third phase documents ways of evaluating the exercise and disseminating results. Phase 1: Establish the goals of public participation Establishing the goals for a public participation exercise consists primarily of determining what issues the public will be engaged around and what the organization’s rationale is for engaging the public. Viable public participation depends on organizations being selective in the topics about which they engage the public and in choosing appropriate questions for engagement. For coverage and resource allocation decisions, it also requires being mindful of the type of allocation question being considered. Step 1: Identify the decision questions/issues to be addressed The first step is to identify the issue or question for which public input is being sought. As with any engagement exercise, questions to be addressed by the public should be clearly stated, in non-technical language, and should be clearly focused on the issue of concern to decision-makers. As the planning process continues, the question or questions may be revised to allow for a more viable process. For questions of coverage and resource allocation, decision-makers must consider the type of question under consideration. Lomas identifies six broad areas for which public input could be sought regarding coverage or resource allocation decisions.12 These six areas are outlined in Table 2, along with examples of questions that could be addressed, and some of the advantages and disadvantages of involving the public in each area. Lomas finds that some coverage and allocation decisions are better suited for public engagement than others (e.g., allocation across board service programs is recommended as one viable area for public engagement). When determining the engagement topic, attention should be given to the type of decision and the likelihood of successfully involving the public for that type of decision.
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TABLE 2 Types of health care coverage/resource allocation decisions Type of Decision
Description
Example of Possible Coverage Question
Implications of Involving the Public
Funding level
Macro-level decisions concerning the level of funding to the health care sector
What proportion of the provincial budget should be directed towards health care?
The public appears to lack interest in directly making such decisions. (However, it is involved as voters in making these macro-political decisions.)
Funding arrangements
Macro-level decisions concerning how the health care sector should be organized
Should health care be provided through regional health authorities?
The public appears to lack interest in making such decisions.
Broad service categories
Meso-level decisions concerning the allocation of funding across service areas
How much of the health care budget should be directed towards acute care, long-term care, prevention?
Recommended area for involving public.
Specific services
Meso-level decisions concerning the allocation of funding within one service area
Which specific cardiac procedures should an acute care hospital offer?
The public appears to lack the interest and skill to make such decisions.
Clinical circumstances
Micro-level decisions about what treatments a patient should receive
When should an individual patient receive a particular treatment?
Clinical decision, generally not appropriate to involve the public.
Socio-demographic circumstances
Micro-level decisions about whether a patient’s characteristics should influence his or her level of care
Should alcoholics be eligible for liver transplants?
The public is interested in making these decisions, but public views may conflict with equity concerns as the public is often more willing to restrict funding to patients whose actions are seen as the cause of their disability.
Step 2: Identify the rationale for involving the public Once the engagement question(s) is determined, the organization should next consider the rationale for involving the public in its decision-making. Possible rationales include: wanting to increase the transparency and legitimacy of the organization’s decision-making process; making the health care system more responsive to the needs of the public; strengthening the organization’s relationship with the public or particular communities; gauging the public’s response to a proposal or to building support for a final decision. For meaningful public participation, the health care organization should be explicit with prospective participants about its rationale for engaging the public. Decision-makers should always keep in mind their rationale for involving the public when choosing the design of the engagement exercise so that the structure supports the organization’s goals for public engagement. Step 3: Confirm or revisit the decision to proceed with a public participation exercise Next, decision-makers must review their goals for public participation and either confirm or reconsider their intention to proceed. The decision to engage the public should not be taken lightly as there are costs to both the organization and participants. The organization puts its reputation and its relationship with the public at risk when a public participation exercise goes poorly. Careful consideration of the topics that the public will be engaged around is crucial for ensuring a successful exercise. Table 3 presents a summary of the screen8
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ing questions that should be considered in evaluating whether or not the topic is suitable for successful and meaningful public engagement. If the response to any question is “no,” the organization should revisit the decision to conduct a public participation exercise around that particular topic. Phase 2: Structure the public participation exercise Having confirmed the specific topic for public engagement, the next stage is to design the engagement exercise. The structure of the public participation exercise is not neutral; it influences the level of participation, who participates and the outcomes. The greater the level of influence the public has on structuring the process, the greater the influence they will have on the outcome. There are advantages to allowing the public early and real influence over how the process is structured. It allows for better buy-in to the process and lessens suspicion that the decision has already been made. However, giving public groups substantial control over how the process is structured reduces the decision-making organization’s level of control. Step 4: Specify the task the public will be asked to undertake Participants in a public participation exercise can be asked to provide different types of feedback and to answer different types of questions relating to coverage and the allocation of health care resources. They can be asked to respond to a specific proposal, identify their own spending priorities, or to decide on specific allocation/coverage questions. Unless the issue is of particular public concern, public participation is
A FRAMEWORK FOR INVOLVING THE PUBLIC IN HEALTH CARE COVERAGE AND RESOURCE ALLOCATION DECISIONS
TABLE 3 Should the organization proceed with a public participation exercise? Phase 1: Screening Questions
RESPONSE YES NO
Have we clearly described the decision/issue for which we are seeking public input? Do we have the authority to choose among a range of options with respect to this decision? Are we explicit about the decision-making process?
Can we clearly state and communicate the criteria and processes for making the decision? Can we describe the weight we will assign to public input in our decision-making?
Is this the type of question in which public involvement is usually successful? •
An issue of particular concern to the public.
•
Providing input/advice to decision-makers about how they should make decisions, for example: o What principles or values should determine which health care services are covered or how health care resources are allocated? o What structure or processes should be in place given the mandate to make health care coverage and resource allocation decisions?
•
Meso-level decisions concerning the allocation of funding across service areas, for example: o How much of the health budget should be directed to long-term care?
Can we clearly and honestly describe the rationale for seeking public participation on this issue? Does the desired level of public involvement consist of two-way communication between participants and the decision-makers and provide some level of public influence on the final decision? Given the above, should we proceed with the design of a public consultation process? (If response to any of the above questions is “no,” the organization should revisit the decision to conduct a public participation exercise.)
more usefully employed to determine how decision-makers themselves should make coverage decisions. This can be achieved by involving the public in a dialogue about the principles or values that should determine the basis on which services are covered or involving the public in determining how the process for making coverage and allocation decisions is structured. For example, determining such things as whether a public advisory board should review decisions or what types of evidence should be considered. An organization’s rationale for engaging the public and the question under review should determine what inputs the public are asked to provide. Step 5: Confirm the desired level of public involvement The decision-making organization must consider beforehand how much influence the participants will have on the final decision. For meaningful public participation, either the public input greatly influences the decision-making process or it will be the deciding factor. The organization should also be explicit with participants about how the outcomes will influence the final decision. Step 6: Determine the timing of the public participation exercise within the decision-making cycle The decision-making cycle starts when an issue emerges on an organization’s agenda, goes through the consideration of a number of options and ends when the final decision is made and communicated. The organization must determine the most appropriate time in the decision-making cycle to un-
dertake public discussion, given the issue at hand and desired level of public participation. The earlier in the decisionmaking cycle that public participation occurs, the easier it is for public input to help frame the discussion around the topic. Step 7: Select participants One of the more contentious decisions in structuring a public engagement process is identifying who to engage. This is partly determined by the engagement question and the health care organization’s rationale for wanting to establish a public participation exercise. The organization must determine the characteristics of the participants that would constitute “fair” representation in order to give voice to the range of views desired. If the organization wants to ensure that differing viewpoints are heard, then the participant mix must reflect the demographics of the entire community, as well as special interest groups or affected stakeholders. If the organization seeks only the input of those most affected by the decision, then a narrower range of participants could be considered. It is important that individuals or groups that face barriers to participation (such as travel costs, childcare arrangements, hearing limitations, language concerns) are given assistance to enable them to participate. It is possible that the initial list of participants may inadvertently exclude one or more interested parties; therefore, the design should be flexible enough to add additional participants. Step 8: Design of the public participation exercise The key to a meaningful public participation exercise is to Healthcare Management FORUM Gestion des soins de santé – Winter/Hiver 2008
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TABLE 4 Advantages and disadvantages of selected public participation approaches Participants
Format
Advantages
Disadvantages
Interactive:
Detailed input
Time consuming
Possible to keep the discussion focused on the task at hand
Costly
One-on-one interviews Focus groups Citizen juries Targeted audience
Limited numbers of participants Opportunity for ongoing discussion and clarification
Citizen assemblies Non-interactive: Invited written submission
Detailed input
Fairness of participant selection open to question No opportunity for discussion/clarification
Can include more participants Low cost to the decision-making organization Interactive:
Can include more participants
Public hearings/meetings
Some opportunity for follow-up discussion
Open houses
General public
Limited ability to keep the input focused on the issue at hand
Process can be dominated by special interest groups Low participation rates by disadvantaged members of the community unless special efforts are made to include them
Non-interactive:
Relatively low cost
No opportunity for discussion
Written submissions
More participants
Process can be dominated by special interest groups
Telephone submissions Surveys (mail or telephone)
use the input from participants to inform decision-making. The challenge for the organization is to design a process that obtains the required information, using methods that are not only fair but also seen to be fair,13 timely with respect to the decision-making cycle and acceptable to participants. The feasibility of conducting a public participation exercise depends on the available resources, the timelines for decision-making and the methods to obtain, analyze and report on public input. Any organization undertaking a public participation exercise must identify the resources available to the exercise (professional and support staff, budget for communications, data gathering and data analysis activities, requirements for meeting space). Once the resources are determined, those responsible for designing the process can select which method(s) of participation will be most effective in achieving the desired goals within the established budgets. Costs will vary according to the number of participants, the geographic areas from which the participant sample is drawn, the methods to inform the public and participants about the issue under discussion, and the participation methods employed. As noted above, at minimum, a meaningful public participation exercise must include some level of two-way communication between the public and decision-makers. Different methods of engagement allow for a greater richness in communication between both groups. More intensive deliberative methods, such as citizen juries, often allow for a better level
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Low participation rates by disadvantaged members of the community unless special efforts are made to include them
of communication with the public than other methods, for example, town hall meetings. In addition to determining at which point in the decision-making cycle public input will be sought, it is also important to determine the timelines for the exercise. Costs are higher for a long, drawn out process; however, the public may be disappointed if there is too little time to participate. If timelines are short, the organization may be tempted to “exploit the convenience of voluntary participation,” which can bias attendance in favour of those whose interests are most affected.14 Once participant characteristics are determined (general public input versus interested stakeholders only), the format of the public participation exercise can be designed to be interactive, non-interactive or a combination of both. Table 4 summarizes some of the advantages and disadvantages of each type of public participation. It is recommended that whenever possible, a public participation exercise consist of at least one opportunity for face-to-face interaction between the organization and participants. Inviting participants to join in the exercise can occur selectively (usually by mail with a follow-up phone call) when representation from interested stakeholders is desired. Soliciting a broader public response can be achieved through interviews with members of the local media, advertisements in the local media and personal contact with representatives of marginalized/disadvantaged groups.
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Health care decisions can be very complex, as they involve issues of equity, effectiveness, efficiency, appropriateness of care and opportunity costs. In determining the amount and type of information presented to participants, organizations should consider the public’s level of knowledge about the decision under consideration, what inputs into the decisionmaking process are expected from the public and how complicated the factors are that affect the coverage/resource allocation decision. There is no magic formula to calculate how much and what type of information the public requires to participate effectively. As Abelson and Lomas write, “if minimal information is presented, the authors are accused of not providing enough detail to allow for informed responses. If detailed information is provided, the process is critiqued for being closed to public input and already decided. If detailed information is accompanied by a rationale for arriving at recommendations, the methodology underlying the rationale is criticized and used by opponents to discredit the restructuring process and proposals.”14
One possible strategy is to involve a sample of the public in a preliminary focus group to obtain advice on the type and amount of information that should be provided to all participants. This feedback, coupled with the informed opinion of those conducting the exercise who are most familiar with its goals and rationale, can provide a reasonable estimate of information requirements. Information should be presented in a format suitable for the participants (in terms of language spoken, literacy level and participant comfort level with the way the information is presented). Effective options include written documents (circulated by mail, in person, e-mail or posted on a web site) and/or formal presentations. Some cultural or disadvantaged groups may prefer more informal information delivery formats.15 If the participants are to represent the general public, more than one means of information delivery will likely be necessary to effectively reach the various population segments. Prior to conducting the exercise, the organization should ensure that it has a clear plan for capturing/recording participants’ responses. If responses are verbal (in focus groups, citizen juries, community meetings), the organization should decide if these meetings will be recorded and transcribed, or if an observer will take notes only. Participants must be informed if the proceedings are recorded and by what means, and given an opportunity to withdraw. If a majority of the participants are uncomfortable with the recording method, the organization will need to revisit this issue. In terms of analyzing the results, the most rigorous approach is to convert all verbal responses to text format and use qualitative computer software to assist in analyzing the results. If surveys are used to collect information, the information would be entered into a database and a quantitative software package used to analyze the results. Additional analysis would identify other consistent themes or significant issues identified by the participants. Where there are insuffi-
cient resources for computer analysis, informal methods can be used, for example, summarizing participants’ main points. Phase 3: Evaluate the process and communicate results Once the public participation exercise is completed and the results analyzed, there are still two additional steps: evaluation of the exercise and dissemination of the results to the appropriate audiences. Step 9: Evaluate the participation exercise The most appropriate method for evaluating the process will in part be determined by the rationale for initiating the process and by the desired level of public involvement in the decision-making. Given that the focus of the framework is on meaningful public participation, the use of quantitative indicators of success, such as the number of participants or the number of positive media stories, is not sufficient. Instead, the evaluation should seek feedback from all involved parties to gauge their opinions of their participation. If face-to-face sessions were employed, many of the evaluation questions could be included in a brief evaluation form completed by participants at the end of the session. Individual key informant interviews with representatives of the decision-making organization, as well as representatives of the participants, could provide richer detail on the evaluation questions. Telephone or mail surveys could also be employed to obtain feedback on processes that involve large participant groups. Step 10: Disseminate the findings It is important that everyone who participated in the process be informed of the outcome, both in terms of the final decision and their role in it. The evaluation results should also be communicated to the participants. The Canadian Health Services Research Foundation’s 1-3-25 knowledge translation strategy (1-page summary; 3-page Executive Summary and 25 page report) is one well-accepted way of preparing written materials for a variety of audiences.16 Given that these reports will focus on the results of a public participation exercise, all three formats should use clear and concise language at a reading level appropriate for public consumption. Other dissemination approaches include direct mailouts, contacting the local media to issue a public report, appearing on local radio and television programs, writing articles for publication in the popular media, convening public meetings to present the findings, posting a summary and a full report on the organization’s web site and/or providing a copy of the full report to anyone who requests it. In order to reach a wide population, and where resources allow, more than one communication method should be employed. Table 5 provides a checklist to ensure that decision-makers have considered all of the elements involved in structuring the public participation exercise reviewed in Phases 2 and 3. If all questions are answered positively, the organization can be reasonably confident that the public engagement exercise will be both meaningful and effective.
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TABLE 5 Checklist for determining whether the exercise has been adequately designed Have we considered all the major components of a public engagement exercise?
Task
Has the task the public is being asked to undertake been specified clearly?
Level of public involvement
Is the desired level of public involvement identified clearly?
The decision-making process and the role of public input in the final decision
Are we explicit about the decision-making process, given the desired level of public involvement?
RESPONSE YES NO
Have the criteria and processes for making the decision been outlined and communicated clearly? Have we described the weight assigned to public input in our decision-making? Have we considered how to deal with public responses that run counter to our mandate or value base?
Timing
Does the public participation exercise occur early in the decision-making cycle? Have we set aside sufficient time to conduct this exercise, given the timelines for the decision-making process?
Participant selection
Does the participant sample adequately represent the range of views we hope to elicit? Are we using appropriate methods to recruit the desired participants?
Participation format
Does our method of engagement allow for two-way communication with participants? Are we comfortable with the level of information provided to participants? Have we consulted a participant sample to ensure that the level of information is adequate for the task and the method of providing the information is acceptable to participants?
Analysis plan
Have we developed a plan to analyze and summarize the findings?
Dissemination plan
Have we developed a dissemination plan for communicating the results?
Evaluation plan
Have we developed an evaluation process?
Review resources
Have we identified sufficient resources to conduct the exercise (money, staff, time)?
Conclusion Given all of the competing goals and demands on health care resources, it is clear that not everyone is going to get what they want from public engagement. Some interest groups may only be satisfied if their proposals are adopted, but the reality is there is no guarantee that a group’s proposals will be adopted even if it participates in the engagement process. Increased public participation is not the panacea to cure all the problems facing the publicly funded health care system. Decision-makers will still face tough choices about which services to cover and fund. The decisions are complex, value laden and often highly politicized. Nonetheless, as health care in Canada is largely publicly funded, effective public input into the decision-making process is highly desirable and there is much to be gained by engaging the wider public. Increasing public participation can be a valuable way of improving accountability, better reflecting the health needs of particular communities, building better relationships between health care institutions and the communities they serve and building public support for the public system. Increasing public involvement in coverage and allocation decisions may not always be easy, but it is certainly worthwhile. The framework presented here should aid decision-makers with the process. 12
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Acknowledgments The Building a Public Dialogue Framework for Defining the Medicare Basket research team included Dr. Thomas Rathwell, Dalhousie University, Dr. Raisa Deber, University of Toronto, Dr. Doreen Neville, Memorial University, Dr. Nuala Kenny, Dalhousie University, Professor Lawrence Nestman, Dalhousie University, Dr. Christine Joffres, Simon Fraser University, Dr. Roger Chafe, Cancer Ontario/University of Toronto, Dr. Patricia Conrad, Canadian Health Services Research Foundation, Heather Chappell, University of Toronto, and Moses Batema, PhD. Candidate, University of Toronto. Financial support for this project was provided by 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.
2.
Chafe R, Neville D, Rathwell T, Deber R. Deciding whether to engage the public. Healthcare Management Forum,2008; 21(3):24-28. Chafe R, Neville D, Rathwell T, Deber R, Kenny K, Nestman L, et al. A framework for involving the public in the medicare
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coverage decisions, 2007. Ottawa, ON: Canadian Health Services Research Foundation. [Accessed January 31, 2008]. Available from: http://schoolofhealthadministration.dal.ca/ Files/Basket_FrameworkPublicHealthCarefinal.pdf 3. Bruni R, Laupacis A, Martin D. Public engagement in setting priorities in health care. Canadian Medical Association Journal,2008;179(1):15-18. 4. Charles C, Lomas J, Giacomini, M. Medical necessity in Canadian health policy: Four meanings and . . . a funeral? The Milbank Quarterly,1997;75(3):365-394. 5. Chafe R. Tragic choices: Deciding on public coverage. Nexus Online, spring 2005. Available from: http://www.nlma.nl.ca/ nexus/issues/spring_2005/articles/article_9.html 6. Ham C, Coulter A. Explicit and implicit rationing: Taking responsibility and avoiding blame for health care choices. Journal of Health Services Research and Policy,2001;6(3):163-9. 7. Rivlin M. Should rationing of health care be explicit? Bulletin of Medical Ethics,2002;177:20-22. 8. MacPherson C, Kenny N. Citizens not consumers: The challenge of meaningful citizen involvement in Canadian health care decisions. Presentation to the Canadian Bioethics Society Conference, Halifax, NS, October 21, 2005. 9. Sterne P. Public consultation guide: Changing the relationship between government and Canadians. Ottawa, ON: Minister of Supply and Services Canada;1997.
10. Rathwell T, Deber R, Kenny N, Nestman L, Neville D, Conrad P, et al. Final report: Building a public dialogue framework for defining the medicare basket. Ottawa, ON:Canadian Health Services Research Foundation;2006. [Accessed January 31, 2008]. Available from: http://www.chsrf.ca/final_research/ ogc/pdf/rathwell_final.pdf 11. Chafe R, Neville D, Rathwell T, Deber R, Kenny N, Nestman L, et al. Annotated bibliography of Canadian public involvement in health care governance (1980-2007);2008. Available from: www.dal.ca/shsa/Research 12. Lomas J. Reluctant rationers: Public input to health care priorities. Journal of Health Services Research and Policy,1997;2(2): 103-11. 13. Stone D. Policy paradox: The art of political decision making. New York: WW Norton & Company;1997. 14. Abelson J, Lomas J. In search of informed input: A systematic approach to involving the public in community decision making. Healthcare Management Forum,1997;9(4):48-52. 15. Higgins JW. Closer to home: The case for experiential participation in health reform. Canadian Journal of Public Health, 1997;90(1):30-34. 16. Canadian Health Services Research Foundation, 2001. Readerfriendly writing – 1:3:25. Available from: http://www.chsrf.ca/ knowledge_transfer/communication_notes/comm_reader_ friendly_writing_e.php
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A framework for involving the public in health care coverage and resource allocation decisions by Roger Chafe, Doreen Neville, Thomas Rathwell, and Raisa Deber Roger Chafe, PhD, is a post-doctoral fellow at Cancer Care Ontario and 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 Coverage and resource allocation decisions are a very important area for public engagement because of their direct impact on the public’s access to care and because the affected services are publicly funded. We present a framework that guides decision-makers through key questions they must address when deciding on, structuring, evaluating and disseminating the results of public engagement exercises, particularly as they relate to coverage and resource allocation decisions. The framework will enable decision-makers to better conduct viable and meaningful citizen engagement around these issues.
I
n our article in the fall edition of FORUM, we presented decisionmakers with some initial points to consider when deciding whether to engage the public about a particular issue.1 We also introduced a framework developed by the Basket Grant Research team,2 which guides decision-makers through key questions they must address when deciding on, structuring, evaluating and disseminating the results of public engagement exercises. In this article, we present the framework in detail. The framework is designed to assist health care decision-makers in government, regional health authorities or other organizations in undertaking successful and meaningful public engagement. Although the framework would likely be useful in structuring any public engagement exercise, it is specifically designed to help structure public participation around coverage and resource allocation decisions. As noted in the companion article, “public” can refer to various combinations of the general public (in their roles as citizens, taxpayers and potential care recipients) and those actually receiving services; views of the legitimate role for the general public vary considerably. Resource allocation decisions can be categorized broadly as decisions that determine resources directed to different parts of the health care system. Examples include whether or not to expand an existing service or to redirect resources between program areas. Coverage decisions are closely related to resource allocation in that they are decisions about whether or not a service or treatment is paid for by the public system, for which populations and/or under what circumstances. Coverage and resource allocation decisions for publicly funded health care services are a particularly important area for the public.3 They are also often difficult for decision-makers to make without outside consultation. One reason for this difficulty is the absence of clear legislative guidance about how these decisions should be made. For example, the Canada Health Act requires that all medically necessary hospital and physician services be publicly financed, but it is silent on coverage for such rapidly growing out-of-hospital services as home care, rehabilitation and pharmaceuticals. Provinces are able to insure these services, but are not required to. Even within the traditional hospital and physician sectors, each province has the power to define what is deemed to be a “medically necessary” service, resulting in considerable
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A FRAMEWORK FOR INVOLVING THE PUBLIC IN HEALTH CARE COVERAGE AND RESOURCE ALLOCATION DECISIONS
variation in access to and provision of services from province to province.4 Choosing to provide coverage and resources for some involves the opportunity cost of not providing something to other patients, so that these decisions always involve winners and losers. Such decisions cannot be determined only according to the evidence; they require a balancing of stakeholder interests and appeals to societal values.5 Finally, with greater public and media focus on these types of decisions, the public is increasingly asking to be more directly involved in determining how these decisions get made.6,7 The framework is designed to encourage meaningful citizen engagement around these issues.8 Meaningful citizen engagement is more than including the public only when it is useful to decision-makers. It requires involving the public in a way that recognizes and respects them not just as users of the health care system (for example, as consumers), but also as citizens with ultimate authority for making health care decisions. Meaningful citizen engagement requires some degree of dialogue between the participants and the decision-making organization9 and that the public participation exercise has some influence on the final decision. Methods The framework is one of the main outputs of a three-year program of research examining public engagement and health resource allocation.10 This program had four main components: (1) an environmental scan of attempts to involve the public in coverage and resource allocation decisions internationally; (2) a systematic review of Canadian experience with public engagement in health care governance;11 (3) an ethical analysis of normative issues involved in priority setting; and (4) a review of private insurance plans’ views on coverage and resource allocation within the public system. A draft of the framework was reviewed by four focus groups: two consisting of representatives of community stakeholder groups and two comprising senior health care decision-makers. In addition, the framework was reviewed individually by a number of experts in public engagement and a select number of decisionmakers who provided helpful and insightful feedback on its application and utility. The basic structure of the public engagement framework The framework is not a prescription for how public participation exercises should be structured. Rather, it guides decision-makers through a series of fundamental choices they must make in structuring any effective and meaningful participation exercise tailored to their own context. The framework comprises three inter-related phases (see Table 1). Each phase shows the steps decision-makers must take in determining whether and how to engage the public. The phases are organized so that decisions about the public participation exercise early on help inform subsequent decisions. The first phase focuses on establishing goals for the public participation exercise and confirming that the exercise is possible and relevant to the decision/issue at hand. The second phase deals with designing the structure of the public participation
TABLE 1 Framework overview Phase 1: Step 1: Step 2: Step 3:
Establish Goals Identify the decision question Clarify the rationale for involving the public Confirm the decision to engage the public
Phase 2:
Structure the Exercise
Step 4: Step 5: Step 6: Step 7: Step 8: Phase 3: Step 9: Step 10:
Specify the task the public will be asked to undertake Confirm the desired level of public involvement Determine the timing of the public participation exercise within the decision-making process Select participants Finalize the structure Evaluate the Exercise and Communicate Results Evaluate the participation exercise Disseminate findings
exercise while the third phase documents ways of evaluating the exercise and disseminating results. Phase 1: Establish the goals of public participation Establishing the goals for a public participation exercise consists primarily of determining what issues the public will be engaged around and what the organization’s rationale is for engaging the public. Viable public participation depends on organizations being selective in the topics about which they engage the public and in choosing appropriate questions for engagement. For coverage and resource allocation decisions, it also requires being mindful of the type of allocation question being considered. Step 1: Identify the decision questions/issues to be addressed The first step is to identify the issue or question for which public input is being sought. As with any engagement exercise, questions to be addressed by the public should be clearly stated, in non-technical language, and should be clearly focused on the issue of concern to decision-makers. As the planning process continues, the question or questions may be revised to allow for a more viable process. For questions of coverage and resource allocation, decision-makers must consider the type of question under consideration. Lomas identifies six broad areas for which public input could be sought regarding coverage or resource allocation decisions.12 These six areas are outlined in Table 2, along with examples of questions that could be addressed, and some of the advantages and disadvantages of involving the public in each area. Lomas finds that some coverage and allocation decisions are better suited for public engagement than others (e.g., allocation across board service programs is recommended as one viable area for public engagement). When determining the engagement topic, attention should be given to the type of decision and the likelihood of successfully involving the public for that type of decision.
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TABLE 2 Types of health care coverage/resource allocation decisions Type of Decision
Description
Example of Possible Coverage Question
Implications of Involving the Public
Funding level
Macro-level decisions concerning the level of funding to the health care sector
What proportion of the provincial budget should be directed towards health care?
The public appears to lack interest in directly making such decisions. (However, it is involved as voters in making these macro-political decisions.)
Funding arrangements
Macro-level decisions concerning how the health care sector should be organized
Should health care be provided through regional health authorities?
The public appears to lack interest in making such decisions.
Broad service categories
Meso-level decisions concerning the allocation of funding across service areas
How much of the health care budget should be directed towards acute care, long-term care, prevention?
Recommended area for involving public.
Specific services
Meso-level decisions concerning the allocation of funding within one service area
Which specific cardiac procedures should an acute care hospital offer?
The public appears to lack the interest and skill to make such decisions.
Clinical circumstances
Micro-level decisions about what treatments a patient should receive
When should an individual patient receive a particular treatment?
Clinical decision, generally not appropriate to involve the public.
Socio-demographic circumstances
Micro-level decisions about whether a patient’s characteristics should influence his or her level of care
Should alcoholics be eligible for liver transplants?
The public is interested in making these decisions, but public views may conflict with equity concerns as the public is often more willing to restrict funding to patients whose actions are seen as the cause of their disability.
Step 2: Identify the rationale for involving the public Once the engagement question(s) is determined, the organization should next consider the rationale for involving the public in its decision-making. Possible rationales include: wanting to increase the transparency and legitimacy of the organization’s decision-making process; making the health care system more responsive to the needs of the public; strengthening the organization’s relationship with the public or particular communities; gauging the public’s response to a proposal or to building support for a final decision. For meaningful public participation, the health care organization should be explicit with prospective participants about its rationale for engaging the public. Decision-makers should always keep in mind their rationale for involving the public when choosing the design of the engagement exercise so that the structure supports the organization’s goals for public engagement. Step 3: Confirm or revisit the decision to proceed with a public participation exercise Next, decision-makers must review their goals for public participation and either confirm or reconsider their intention to proceed. The decision to engage the public should not be taken lightly as there are costs to both the organization and participants. The organization puts its reputation and its relationship with the public at risk when a public participation exercise goes poorly. Careful consideration of the topics that the public will be engaged around is crucial for ensuring a successful exercise. Table 3 presents a summary of the screen8
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ing questions that should be considered in evaluating whether or not the topic is suitable for successful and meaningful public engagement. If the response to any question is “no,” the organization should revisit the decision to conduct a public participation exercise around that particular topic. Phase 2: Structure the public participation exercise Having confirmed the specific topic for public engagement, the next stage is to design the engagement exercise. The structure of the public participation exercise is not neutral; it influences the level of participation, who participates and the outcomes. The greater the level of influence the public has on structuring the process, the greater the influence they will have on the outcome. There are advantages to allowing the public early and real influence over how the process is structured. It allows for better buy-in to the process and lessens suspicion that the decision has already been made. However, giving public groups substantial control over how the process is structured reduces the decision-making organization’s level of control. Step 4: Specify the task the public will be asked to undertake Participants in a public participation exercise can be asked to provide different types of feedback and to answer different types of questions relating to coverage and the allocation of health care resources. They can be asked to respond to a specific proposal, identify their own spending priorities, or to decide on specific allocation/coverage questions. Unless the issue is of particular public concern, public participation is
A FRAMEWORK FOR INVOLVING THE PUBLIC IN HEALTH CARE COVERAGE AND RESOURCE ALLOCATION DECISIONS
TABLE 3 Should the organization proceed with a public participation exercise? Phase 1: Screening Questions
RESPONSE YES NO
Have we clearly described the decision/issue for which we are seeking public input? Do we have the authority to choose among a range of options with respect to this decision? Are we explicit about the decision-making process?
Can we clearly state and communicate the criteria and processes for making the decision? Can we describe the weight we will assign to public input in our decision-making?
Is this the type of question in which public involvement is usually successful? •
An issue of particular concern to the public.
•
Providing input/advice to decision-makers about how they should make decisions, for example: o What principles or values should determine which health care services are covered or how health care resources are allocated? o What structure or processes should be in place given the mandate to make health care coverage and resource allocation decisions?
•
Meso-level decisions concerning the allocation of funding across service areas, for example: o How much of the health budget should be directed to long-term care?
Can we clearly and honestly describe the rationale for seeking public participation on this issue? Does the desired level of public involvement consist of two-way communication between participants and the decision-makers and provide some level of public influence on the final decision? Given the above, should we proceed with the design of a public consultation process? (If response to any of the above questions is “no,” the organization should revisit the decision to conduct a public participation exercise.)
more usefully employed to determine how decision-makers themselves should make coverage decisions. This can be achieved by involving the public in a dialogue about the principles or values that should determine the basis on which services are covered or involving the public in determining how the process for making coverage and allocation decisions is structured. For example, determining such things as whether a public advisory board should review decisions or what types of evidence should be considered. An organization’s rationale for engaging the public and the question under review should determine what inputs the public are asked to provide. Step 5: Confirm the desired level of public involvement The decision-making organization must consider beforehand how much influence the participants will have on the final decision. For meaningful public participation, either the public input greatly influences the decision-making process or it will be the deciding factor. The organization should also be explicit with participants about how the outcomes will influence the final decision. Step 6: Determine the timing of the public participation exercise within the decision-making cycle The decision-making cycle starts when an issue emerges on an organization’s agenda, goes through the consideration of a number of options and ends when the final decision is made and communicated. The organization must determine the most appropriate time in the decision-making cycle to un-
dertake public discussion, given the issue at hand and desired level of public participation. The earlier in the decisionmaking cycle that public participation occurs, the easier it is for public input to help frame the discussion around the topic. Step 7: Select participants One of the more contentious decisions in structuring a public engagement process is identifying who to engage. This is partly determined by the engagement question and the health care organization’s rationale for wanting to establish a public participation exercise. The organization must determine the characteristics of the participants that would constitute “fair” representation in order to give voice to the range of views desired. If the organization wants to ensure that differing viewpoints are heard, then the participant mix must reflect the demographics of the entire community, as well as special interest groups or affected stakeholders. If the organization seeks only the input of those most affected by the decision, then a narrower range of participants could be considered. It is important that individuals or groups that face barriers to participation (such as travel costs, childcare arrangements, hearing limitations, language concerns) are given assistance to enable them to participate. It is possible that the initial list of participants may inadvertently exclude one or more interested parties; therefore, the design should be flexible enough to add additional participants. Step 8: Design of the public participation exercise The key to a meaningful public participation exercise is to Healthcare Management FORUM Gestion des soins de santé – Winter/Hiver 2008
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TABLE 4 Advantages and disadvantages of selected public participation approaches Participants
Format
Advantages
Disadvantages
Interactive:
Detailed input
Time consuming
Possible to keep the discussion focused on the task at hand
Costly
One-on-one interviews Focus groups Citizen juries Targeted audience
Limited numbers of participants Opportunity for ongoing discussion and clarification
Citizen assemblies Non-interactive: Invited written submission
Detailed input
Fairness of participant selection open to question No opportunity for discussion/clarification
Can include more participants Low cost to the decision-making organization Interactive:
Can include more participants
Public hearings/meetings
Some opportunity for follow-up discussion
Open houses
General public
Limited ability to keep the input focused on the issue at hand
Process can be dominated by special interest groups Low participation rates by disadvantaged members of the community unless special efforts are made to include them
Non-interactive:
Relatively low cost
No opportunity for discussion
Written submissions
More participants
Process can be dominated by special interest groups
Telephone submissions Surveys (mail or telephone)
use the input from participants to inform decision-making. The challenge for the organization is to design a process that obtains the required information, using methods that are not only fair but also seen to be fair,13 timely with respect to the decision-making cycle and acceptable to participants. The feasibility of conducting a public participation exercise depends on the available resources, the timelines for decision-making and the methods to obtain, analyze and report on public input. Any organization undertaking a public participation exercise must identify the resources available to the exercise (professional and support staff, budget for communications, data gathering and data analysis activities, requirements for meeting space). Once the resources are determined, those responsible for designing the process can select which method(s) of participation will be most effective in achieving the desired goals within the established budgets. Costs will vary according to the number of participants, the geographic areas from which the participant sample is drawn, the methods to inform the public and participants about the issue under discussion, and the participation methods employed. As noted above, at minimum, a meaningful public participation exercise must include some level of two-way communication between the public and decision-makers. Different methods of engagement allow for a greater richness in communication between both groups. More intensive deliberative methods, such as citizen juries, often allow for a better level
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Low participation rates by disadvantaged members of the community unless special efforts are made to include them
of communication with the public than other methods, for example, town hall meetings. In addition to determining at which point in the decision-making cycle public input will be sought, it is also important to determine the timelines for the exercise. Costs are higher for a long, drawn out process; however, the public may be disappointed if there is too little time to participate. If timelines are short, the organization may be tempted to “exploit the convenience of voluntary participation,” which can bias attendance in favour of those whose interests are most affected.14 Once participant characteristics are determined (general public input versus interested stakeholders only), the format of the public participation exercise can be designed to be interactive, non-interactive or a combination of both. Table 4 summarizes some of the advantages and disadvantages of each type of public participation. It is recommended that whenever possible, a public participation exercise consist of at least one opportunity for face-to-face interaction between the organization and participants. Inviting participants to join in the exercise can occur selectively (usually by mail with a follow-up phone call) when representation from interested stakeholders is desired. Soliciting a broader public response can be achieved through interviews with members of the local media, advertisements in the local media and personal contact with representatives of marginalized/disadvantaged groups.
A FRAMEWORK FOR INVOLVING THE PUBLIC IN HEALTH CARE COVERAGE AND RESOURCE ALLOCATION DECISIONS
Health care decisions can be very complex, as they involve issues of equity, effectiveness, efficiency, appropriateness of care and opportunity costs. In determining the amount and type of information presented to participants, organizations should consider the public’s level of knowledge about the decision under consideration, what inputs into the decisionmaking process are expected from the public and how complicated the factors are that affect the coverage/resource allocation decision. There is no magic formula to calculate how much and what type of information the public requires to participate effectively. As Abelson and Lomas write, “if minimal information is presented, the authors are accused of not providing enough detail to allow for informed responses. If detailed information is provided, the process is critiqued for being closed to public input and already decided. If detailed information is accompanied by a rationale for arriving at recommendations, the methodology underlying the rationale is criticized and used by opponents to discredit the restructuring process and proposals.”14
One possible strategy is to involve a sample of the public in a preliminary focus group to obtain advice on the type and amount of information that should be provided to all participants. This feedback, coupled with the informed opinion of those conducting the exercise who are most familiar with its goals and rationale, can provide a reasonable estimate of information requirements. Information should be presented in a format suitable for the participants (in terms of language spoken, literacy level and participant comfort level with the way the information is presented). Effective options include written documents (circulated by mail, in person, e-mail or posted on a web site) and/or formal presentations. Some cultural or disadvantaged groups may prefer more informal information delivery formats.15 If the participants are to represent the general public, more than one means of information delivery will likely be necessary to effectively reach the various population segments. Prior to conducting the exercise, the organization should ensure that it has a clear plan for capturing/recording participants’ responses. If responses are verbal (in focus groups, citizen juries, community meetings), the organization should decide if these meetings will be recorded and transcribed, or if an observer will take notes only. Participants must be informed if the proceedings are recorded and by what means, and given an opportunity to withdraw. If a majority of the participants are uncomfortable with the recording method, the organization will need to revisit this issue. In terms of analyzing the results, the most rigorous approach is to convert all verbal responses to text format and use qualitative computer software to assist in analyzing the results. If surveys are used to collect information, the information would be entered into a database and a quantitative software package used to analyze the results. Additional analysis would identify other consistent themes or significant issues identified by the participants. Where there are insuffi-
cient resources for computer analysis, informal methods can be used, for example, summarizing participants’ main points. Phase 3: Evaluate the process and communicate results Once the public participation exercise is completed and the results analyzed, there are still two additional steps: evaluation of the exercise and dissemination of the results to the appropriate audiences. Step 9: Evaluate the participation exercise The most appropriate method for evaluating the process will in part be determined by the rationale for initiating the process and by the desired level of public involvement in the decision-making. Given that the focus of the framework is on meaningful public participation, the use of quantitative indicators of success, such as the number of participants or the number of positive media stories, is not sufficient. Instead, the evaluation should seek feedback from all involved parties to gauge their opinions of their participation. If face-to-face sessions were employed, many of the evaluation questions could be included in a brief evaluation form completed by participants at the end of the session. Individual key informant interviews with representatives of the decision-making organization, as well as representatives of the participants, could provide richer detail on the evaluation questions. Telephone or mail surveys could also be employed to obtain feedback on processes that involve large participant groups. Step 10: Disseminate the findings It is important that everyone who participated in the process be informed of the outcome, both in terms of the final decision and their role in it. The evaluation results should also be communicated to the participants. The Canadian Health Services Research Foundation’s 1-3-25 knowledge translation strategy (1-page summary; 3-page Executive Summary and 25 page report) is one well-accepted way of preparing written materials for a variety of audiences.16 Given that these reports will focus on the results of a public participation exercise, all three formats should use clear and concise language at a reading level appropriate for public consumption. Other dissemination approaches include direct mailouts, contacting the local media to issue a public report, appearing on local radio and television programs, writing articles for publication in the popular media, convening public meetings to present the findings, posting a summary and a full report on the organization’s web site and/or providing a copy of the full report to anyone who requests it. In order to reach a wide population, and where resources allow, more than one communication method should be employed. Table 5 provides a checklist to ensure that decision-makers have considered all of the elements involved in structuring the public participation exercise reviewed in Phases 2 and 3. If all questions are answered positively, the organization can be reasonably confident that the public engagement exercise will be both meaningful and effective.
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TABLE 5 Checklist for determining whether the exercise has been adequately designed Have we considered all the major components of a public engagement exercise?
Task
Has the task the public is being asked to undertake been specified clearly?
Level of public involvement
Is the desired level of public involvement identified clearly?
The decision-making process and the role of public input in the final decision
Are we explicit about the decision-making process, given the desired level of public involvement?
RESPONSE YES NO
Have the criteria and processes for making the decision been outlined and communicated clearly? Have we described the weight assigned to public input in our decision-making? Have we considered how to deal with public responses that run counter to our mandate or value base?
Timing
Does the public participation exercise occur early in the decision-making cycle? Have we set aside sufficient time to conduct this exercise, given the timelines for the decision-making process?
Participant selection
Does the participant sample adequately represent the range of views we hope to elicit? Are we using appropriate methods to recruit the desired participants?
Participation format
Does our method of engagement allow for two-way communication with participants? Are we comfortable with the level of information provided to participants? Have we consulted a participant sample to ensure that the level of information is adequate for the task and the method of providing the information is acceptable to participants?
Analysis plan
Have we developed a plan to analyze and summarize the findings?
Dissemination plan
Have we developed a dissemination plan for communicating the results?
Evaluation plan
Have we developed an evaluation process?
Review resources
Have we identified sufficient resources to conduct the exercise (money, staff, time)?
Conclusion Given all of the competing goals and demands on health care resources, it is clear that not everyone is going to get what they want from public engagement. Some interest groups may only be satisfied if their proposals are adopted, but the reality is there is no guarantee that a group’s proposals will be adopted even if it participates in the engagement process. Increased public participation is not the panacea to cure all the problems facing the publicly funded health care system. Decision-makers will still face tough choices about which services to cover and fund. The decisions are complex, value laden and often highly politicized. Nonetheless, as health care in Canada is largely publicly funded, effective public input into the decision-making process is highly desirable and there is much to be gained by engaging the wider public. Increasing public participation can be a valuable way of improving accountability, better reflecting the health needs of particular communities, building better relationships between health care institutions and the communities they serve and building public support for the public system. Increasing public involvement in coverage and allocation decisions may not always be easy, but it is certainly worthwhile. The framework presented here should aid decision-makers with the process. 12
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Acknowledgments The Building a Public Dialogue Framework for Defining the Medicare Basket research team included Dr. Thomas Rathwell, Dalhousie University, Dr. Raisa Deber, University of Toronto, Dr. Doreen Neville, Memorial University, Dr. Nuala Kenny, Dalhousie University, Professor Lawrence Nestman, Dalhousie University, Dr. Christine Joffres, Simon Fraser University, Dr. Roger Chafe, Cancer Ontario/University of Toronto, Dr. Patricia Conrad, Canadian Health Services Research Foundation, Heather Chappell, University of Toronto, and Moses Batema, PhD. Candidate, University of Toronto. Financial support for this project was provided by 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.
2.
Chafe R, Neville D, Rathwell T, Deber R. Deciding whether to engage the public. Healthcare Management Forum,2008; 21(3):24-28. Chafe R, Neville D, Rathwell T, Deber R, Kenny K, Nestman L, et al. A framework for involving the public in the medicare
A FRAMEWORK FOR INVOLVING THE PUBLIC IN HEALTH CARE COVERAGE AND RESOURCE ALLOCATION DECISIONS
coverage decisions, 2007. Ottawa, ON: Canadian Health Services Research Foundation. [Accessed January 31, 2008]. Available from: http://schoolofhealthadministration.dal.ca/ Files/Basket_FrameworkPublicHealthCarefinal.pdf 3. Bruni R, Laupacis A, Martin D. Public engagement in setting priorities in health care. Canadian Medical Association Journal,2008;179(1):15-18. 4. Charles C, Lomas J, Giacomini, M. Medical necessity in Canadian health policy: Four meanings and . . . a funeral? The Milbank Quarterly,1997;75(3):365-394. 5. Chafe R. Tragic choices: Deciding on public coverage. Nexus Online, spring 2005. Available from: http://www.nlma.nl.ca/ nexus/issues/spring_2005/articles/article_9.html 6. Ham C, Coulter A. Explicit and implicit rationing: Taking responsibility and avoiding blame for health care choices. Journal of Health Services Research and Policy,2001;6(3):163-9. 7. Rivlin M. Should rationing of health care be explicit? Bulletin of Medical Ethics,2002;177:20-22. 8. MacPherson C, Kenny N. Citizens not consumers: The challenge of meaningful citizen involvement in Canadian health care decisions. Presentation to the Canadian Bioethics Society Conference, Halifax, NS, October 21, 2005. 9. Sterne P. Public consultation guide: Changing the relationship between government and Canadians. Ottawa, ON: Minister of Supply and Services Canada;1997.
10. Rathwell T, Deber R, Kenny N, Nestman L, Neville D, Conrad P, et al. Final report: Building a public dialogue framework for defining the medicare basket. Ottawa, ON:Canadian Health Services Research Foundation;2006. [Accessed January 31, 2008]. Available from: http://www.chsrf.ca/final_research/ ogc/pdf/rathwell_final.pdf 11. Chafe R, Neville D, Rathwell T, Deber R, Kenny N, Nestman L, et al. Annotated bibliography of Canadian public involvement in health care governance (1980-2007);2008. Available from: www.dal.ca/shsa/Research 12. Lomas J. Reluctant rationers: Public input to health care priorities. Journal of Health Services Research and Policy,1997;2(2): 103-11. 13. Stone D. Policy paradox: The art of political decision making. New York: WW Norton & Company;1997. 14. Abelson J, Lomas J. In search of informed input: A systematic approach to involving the public in community decision making. Healthcare Management Forum,1997;9(4):48-52. 15. Higgins JW. Closer to home: The case for experiential participation in health reform. Canadian Journal of Public Health, 1997;90(1):30-34. 16. Canadian Health Services Research Foundation, 2001. Readerfriendly writing – 1:3:25. Available from: http://www.chsrf.ca/ knowledge_transfer/communication_notes/comm_reader_ friendly_writing_e.php
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