Community participation in health care decision making: Is it feasible?

Michael A. Singer, MD, FRCPC

Canadian Medical Association Journal 1995; 153: 421-425

Abstract
Introduction
Participation: definition and determinants
Examples of public participation
Conclusion
References

Abstract

 Health care reform strategies proposed by provincial governments include decentralized funding and increased public participation in decision making. These proposals do not give details as to the public participation process, and a number of questions have been raised by the experience of some communities. Which citizens should form the decision-making group? What information do they need? What kinds of decisions should they make? What level of participation should they have? The results of a survey by Abelson and associates (see abstract in this issue) challenge the assumption that "communities" are willing to participate in health care and social-service decision making. Willingness varied according to the composition of the groups polled, and participants' support for traditional decision makers increased after the complexities of the decision-making process were discussed. However, whereas their study measured willingness to participate at one point in time only, experience gained from Ontario's Better Beginnings, Better Futures project indicates that, given sufficient time, "ordinary" citizens are willing and can acquire the skills needed to decide how resources should be allocated for social services.

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Résumé

Les stratégies de réforme du système de santé proposées par les gouvernements provinciaux comprennent la décentralisation du financement et la participation accrue de la population à la prise des décisions. Ces propositions ne précisent pas en détail le mécanisme de participation de la population, et l'expérience de quelques communautés a soulevé des questions. Qui devrait faire partie du groupe décisionnel? De quels renseignements ont besoin ces personnes? Quels genres de décisions devraient-elles prendre? À quel niveau devrait s'établir leur participation? Les résultats d'une enquête effectuée par Abelson et ses collaborateurs (voir le résumé) contestent l'hypothèse selon laquelle les «communautés» sont disposées à participer à la prise de décisions sur les soins de santé et les services sociaux. La volonté de participer a varié selon la composition des groupes sondés et l'appui accordé par les participants aux décideurs traditionnels a augmenté après discussion des complexités du processus décisionnel. Si cette étude a mesuré de façon ponctuelle la volonté de participer, l'expérience acquise à la suite du projet ontarien «Partir d'un bon pas pour un avenir meilleur» indique toutefois que, si on leur en donne le temps, les «simples» citoyens peuvent acquérir les connaissances spécialisées nécessaires pour décider de la répartition des ressources avec les services sociaux, et sont prêts à le faire.

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Introduction

The Canada Health Act states that the primary objectives of Canadian health policy are to protect, promote or restore the physical and mental well-being of resident Canadians and to facilitate reasonable access to health services regardless of financial or other barriers [1]. Certain structural aspects of health care delivery such as central managerial regulation, global budgets and a single payer managed to keep costs down initially, but cash-strapped provincial governments are now re-examining their financial commitment to health care and other social services. Although it is clearly within the domain of government to set limits on health care spending, whose responsibility is it to allocate the limited resources that are made available? What role should the public play in deciding how to allocate health care funds?

Provincial governments across the country envision an increasingly important role for the public in the management of diminishing resources. Recent reports [2-6] on health care reform describe regional governance structures in which funding is decentralized and public participation in decision making is increased. However, these reports give few details about how the public participation process should work. There are many unknowns. For example, the trend toward the devolution of authority in favour of public decision making rests on the assumption that the public wants to get involved, but the results of a survey by Abelson and associates (see abstract) suggest that a community's willingness to participate in the allocation of health care resources is contingent on a number of factors and should not be taken for granted. To put this study into context, I will highlight some of the literature on health care participation as well as the experience that has already been gained at regional and community levels. I will conclude by noting the importance of Abelson and associates' study and suggest what challenges lie ahead in determining the feasibility and effectiveness of this trend.

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Participation: definition and determinants

Participation can be defined as the sum of actions taken by ordinary members of a political system in order to influence or attempt to influence outcomes [7]. Participation varies in extent and intensity. It is considered increasingly extensive as more people engage in it and more intensive as its cost to the individual in effort, money or time increases [7]. Participation by ordinary citizens is determined by the balance between benefits and costs, and, although benefits include collective goals, personal incentives and personal costs are notably the dominant factors. The intensity of participation varies inversely with the size of the participating group. The more intense the activity, the higher the cost to participants in money and time -- with the result that fewer people participate. The smaller the participating group, the less representative it will be of the affected population. Finally, individuals of higher socioeconomic status are better placed to bear the costs of participation [8] and hence tend to be overrepresented when participation is intensive.

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Examples of public participation

Given that a community can be quite heterogeneous, which group or groups of citizens should be selected to form a representative decision-making body? The community meeting process used in Oregon to help prioritize health services [9-11] was an intensive one that, predictably, attracted participants from the higher socioeconomic sector of the population. The consultative process used in an inner-city health district in London, England [12,13], involved representatives of community groups (e.g., elderly people, disabled people and ethnic groups) and of tenant associations, a random sample of the population and three groups of physicians (general practitioners, consultants and public health physicians). This participatory process yielded several interesting results. For the "public" (nonphysician) groups the assessment of priorities depended critically on how the information was presented, and their ranking of certain health service areas and treatments differed significantly from ranking by the physician groups.

Unlike the public-participation initiatives in Oregon and the United Kingdom, the process in the regional municipality of Hamilton-Wentworth, Ont. [14,15] was not restricted to health care and elicited citizens' views on a range of environmental, economic and social issues. This broad perspective introduced the concept of trade-offs and competing priorities, which are less apparent when health care is considered in isolation.

Launched in 1989, the Better Beginnings, Better Futures project [16] is a 25-year primary prevention study funded by the Ontario government to assess the effectiveness of community-based programs in preventing emotional, behavioural, physical and cognitive problems in children from economically disadvantaged communities. An important component of this project is the meaningful involvement of parents and community residents. Programs that applied for funding under the project had to demonstrate a commitment to resident involvement by ensuring that at least half of the members of every major committee were parents or community leaders. The resulting experience with resident participation has been summarized in several publications [8,17,18]. At all of the project sites described, residents were involved in developing programs, hiring staff and making decisions about the location of neighbourhood centres and programs. Participating residents were not chosen by random selection but, rather, came forward as interested residents or unofficial community leaders. It usually took several years of concerted effort to create and sustain a full range of resident participation in the decision- making process. Saltman [19] has said that a sustainable participatory process in health care and social services will probably require that citizens be empowered with real influence in budgetary and resource-allocation decisions. Public involvement in health care decision making in Oregon and the United Kingdom has so far been consultative only. However, the participation of citizens in Rossland, BC, in local government [20], although not directly related to health care, does indicate that citizens are capable of weighing priorities and making decisions about the allocation of resources. Some of the issues raised by these examples of public participation can be summarized as follows.

Abelson and associates make an important contribution to the literature by directly addressing many of the issues that have been raised by previous models of public participation. Selecting five potential decision-making groups within each of six communities, they used deliberative polling to cover a series of topics. They found that randomly selected citizens and attendees at town-hall meetings (i.e., interested citizens) tended to prefer a consultative role, whereas a majority of elected officials, appointees to district health councils and experts were willing to accept responsibility for one or more of the specific types of decision making examined. All groups ranked the requirement for information about community needs first and the requirement for information about community preferences last. When asked to judge the suitability of seven different bodies for making all local health care and social-services decisions, participants expressed a strong preference for some form of combined decision-making body. Experts, interested citizens, the provincial government and elected officials were the most popular choices for this combined group. The suitability of the provincial government and district health council appointees as sole decision-making groups was rated more highly after the complexities of the decision-making process had been discussed. Unfortunately, the design of the study did not allow the authors to test whether a participatory process that is only consultative is sustainable and whether different decision-making groups given the same information would reach similar or different decisions.

The results of this study call into question the assumption that "communities" are willing to participate in health care and social-service decision making. Willingness to participate and the level of participation desired varied according to the composition of the groups polled, and, as noted, support for traditional decision makers was greater after the complexity of the decision-making process had been discussed.

The conclusions that can be drawn from this study may be limited by its methodology. The survey measured willingness to participate and the desired level of participation at one point in time only, whereas potential decision-makers, especially "ordinary citizens," may require a considerable period to acquire the confidence to make decisions about complex subjects. The Better Beginnings, Better Futures project [16] illustrates that, given sufficient time, "ordinary citizens" can acquire the necessary skills to decide how resources should be allocated for social services.

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Conclusion

Although increased public involvement in decision making is a central feature of proposed health care reforms, many questions remain as to the details and even the feasibility of the participation process. It is not yet clear which of many citizen groups within a geographic area should be included in a decision-making body or how to define and ensure proper representation of the community. The feasibility of public participation is cast in some doubt by Abelson and associates' finding that willingness to participate varied according to the composition of the group. However, their study, along with previous models of participation, do allow us to draw certain conclusions. The most suitable decision-making body appears to be a mix of "ordinary" citizens and experts. These "ordinary" citizens would most likely be self-selected (i.e., those most interested in participating) rather than a random sample of community members. Experience with the Better Beginnings, Better Futures project indicates that the "ordinary" citizens of such a group may need several years to acquire the self- confidence and skills necessary for full participation in allocation decisions. Many of the details of participation will likely be worked out only after such a process is put in place. On balance, I am optimistic that public participation is possible. However, such a process will take time to evolve, and I am concerned that the perceived urgency of health care reform may not allow sufficient time for this evolution to occur.

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References

  1. Taylor MG: The Canadian health care system 1974-1984. In Evans RG, Stoddart GL (eds): Medicare at Maturity, Banff Centre for Continuing Education, Banff, Alta, 1989
  2. Closer to Home: Report of the British Columbia Royal Commission on Health Care and Costs, Crown Publications, Victoria, 1991
  3. Health Strategy for the Nineties: Managing Better Health, Nova Scotia Royal Commission on Health Care, Halifax, 1990
  4. A Saskatchewan Vision for Health: a Framework for Change, Saskachewan Department of Health, Regina, 1992
  5. The Rainbow Report: Our Vision for Health, Premier's Commission on Future Health Care for Albertans, Edmonton, 1989
  6. Working Together to Achieve Better Health for All [summary of final report], Southwestern Ontario Comprehensive Health System Planning Commission, Ontario Ministry of Health, Toronto, 1991
  7. Nagel JH: Participation, Prentice-Hall, Englewood Cliffs, NJ. 1987
  8. Cameron G, Peirson L, Pancer SM: Resident participation in the Better Beginnings, Better Futures Prevention Project: Part II. Factors that facilitate and hinder involvement. Can J Commun Ment Health 1994; 13: 213-227
  9. Kitzhaber JA: Prioritising health services in an era of limits: the Oregon experience. BMJ 1993; 307: 373-377
  10. Dixon J, Welch HG: Priority setting: lessons from Oregon. Lancet 1991; 337: 891-894
  11. Hasnain R, Garland M: Health Care in Common: Report of the Oregon Health Decisions Community Meeting Process, Oregon Health Decisions, Salem, Ore, 1990
  12. Ham C: Priority setting in the NHS: reports from six districts. BMJ 1993; 307: 345-438
  13. Bowling A, Jacobson B, Southgate L: Health service priorities: explorations in consultation of the public and health professionals on priority setting in an inner London health district. Soc Sci Med 1993; 37: 851-857
  14. Hamilton-Wentworth's Sustainable Community Initiative [project summary], Hamilton-Wentworth Planning and Development Department, Hamilton, Ont, 1994
  15. A Report of the Implementation Team on Community Well-being, Health, and Quality of Life, Hamilton-Wentworth Planning and Development Department, Hamilton, Ont, 1992
  16. Peters R De V, Russell CC: Better Beginnings, Better Futures Project: Model, Program and Research Overview, Ministry of Community and Social Services, Toronto, 1994
  17. Pancer SM, Cameron G: Resident participation in the Better Beginnings, Better Futures Prevention Project: Part I. The impacts of involvement. Can J Commun Ment Health 1994; 13: 197-211
  18. Reitsma-Street M, Arnold R: Community-based action research in a multi-site prevention project: challenges and resolutions. Can J Commun Ment Health 1994; 13: 229-240
  19. Saltman RB: Patient choice and patient empowerment in northern European health systems: a conceptual framework. Int J Health Serv 1994; 24: 201-229
  20. Delacourt S: Rossland's quiet revolution. Globe and Mail [Toronto] 1994; May 21: D1, D2
CMAJ August 15, 1995 (vol 153, no 4) / JAMC le 15 août 1995 (vol 153, no 4)