Document(s) 8 of 21

Community participation in research and development makes good economic, scientific, and moral sense. It can, for example, achieve more efficient allocation of resources for research by better revealing the full extent of societal demand for various resources. Similarly, strengthened demand for research and interaction between researchers and users can make the conduct of research more efficient. Community participation also promotes equity by countering the tendency of research to reflect the views of an intellectual elite and by enabling national agendas to reflect the interests of local groups.

The community is one of three major stakeholders in Essential National Health Research (ENHR), along with researchers and policymakers. Yet, countries have run up against issues of who can and should speak for communities, biases about communities’ ability and willingness to participate, and impatience with the time and groundwork needed to foster an effective partnership of all three stakeholders. Their experiences offer a number of lessons for realizing this ideal. These lessons fall under six categories, corresponding to the six questions addressed in this chapter, each of which underscores the need for considerable sensitivity, wisdom, persistence, and skill in appropriately involving various groups in research:

• Who is the third stakeholder? — Community can mean many things — for example, the inhabitants of a village or a group of geographically dispersed people suffering from the same illness or sharing an interest in a particular resource. It is imperative to articulate clearly what is meant by community while taking a pragmatic, context-sensitive approach to conceptualizing it. Community is defined for a purpose and in relation to other stakeholders in a particular situation.

• What does community participation in ENHR entail? — Participation may vary in intensity and with the phases of research. Effective community involvement is, most importantly, a matter of reciprocity and a continuing dialogue in which participation takes various forms and influences change in several directions.

• Who speaks for whom? — Elected or appointed officials, nongovernmental-organization (NGO) officials or front-line workers, health practitioners, and men often speak for communities. All representation is necessarily partial, but researchers should make it meaningful. Tokenism affects both the selection of representatives and the ways they participate. Researchers and policymakers have sometimes lost sight of the fact that ENHR inevitably challenges the priorities of traditional research communities; the politics of power ensure that the voices of the poorest people, who bear the greatest burden of disease, are little heard. The other ENHR partners must try to ensure that, in making their own voices heard, they do not make those of others less audible.

• Researchers and policymakers may strengthen existing forms of organization or help create new ones when they address some people and not others as representatives of communities. To address problems of inequity in health, one needs to determine who has not been getting their say and include these people in discussions. Without their participation, discussions of equity may remain abstract and academic. More importantly, one needs to create ways to view local realities from a national perspective — establishing a strong ENHR portfolio of community-oriented research projects provides the widest possible perspective. National research-coordinating mechanisms should establish guidelines or policy on the use of participatory methods in research and methods to encourage community participation in ENHR projects.

• When is community participation in research relevant? — Operational studies and action research have tended to lend themselves best to opportunities for community participation. They are as much about solving problems as about doing research in the academic sense. Joint explorations of local conditions by community members and researchers lead them to make systematic attempts to find new ways to manage problems. The research subjects appreciate this kind of “learning for a purpose.” Yet, community participation is also relevant to epidemiologic and survey studies, as well as health-systems and clinical research.

• What kinds of relations exist between researchers and communities? — Community participation depends on relationships between researchers and communities, as well as on each stakeholder’s expectations for the research. The issue of how researchers and communities relate to each other is also one of frameworks and institutions. One overall national coordinating body may not have sole responsibility for fostering such relationships. An ENHR mechanism should include the identification of frameworks to support contacts and strengthen the capacity of communities as users of research.

• What are the expectations and trade-offs of community participation? — Not always is there a synergy of interests among stakeholders. Community participation demands resources from the researchers, especially time, for dialogue and attend to the interests and expectations of community members, which often conflict with research goals or methods. Communities tend to be most interested in knowledge that has relevance to their lives. Demands are made on their time and material resources, often with no compensation. When their efforts seem to result in no benefit, they may feel bitter or lose interest in the research.

• In future, it may be most fruitful to think of the relations among community, researcher, and policymaker as a coalition struck to define problems and learn ways to solve them. The rigid “iron-triangle” concept of the stakeholders, with its linear communications and trade-offs, should give way to an idea of learning and innovation coalitions that entail issue-based alliances, debate, and negotiation between sometimes disparate parties. Such coalitions draw on the knowledge and experience of all partners to define common goals, acquire new understanding, and develop solutions to specific health problems. They require flexibility and a long-term approach.

• Instead of thinking in terms of conventional individual research protocols with set objectives, researchers should think in terms of phases of research, series of projects, or continuing exchange. To establish dialogue, researchers must meet communities in a variety of situations over time, so that they each have real opportunities to learn and communicate. It also requires researchers to communicate about their research in appropriate ways. Disseminating findings and improving the researchers’ skills in this area are crucial tasks. Social accountability needs to be instilled in new researchers and encouraged in more experienced ones.

• The organizations of civil society may have special roles to play in coalition-building. Structures need to be in place to encourage relationships between organizations and researchers, and here policymakers should take steps to establish an organ or channel of communication. A possible avenue for this would be what are known in Europe and North America as “science shops,” which function as a link between universities and communities in the larger society.

• Fostering an awareness of these obligations — along with the willingness of communities to take ownership of their health and well-being and work toward individual and social change — is the task of purpose-specific coalitions and the means to achieving greater equity in health and links between policy and action.

Community participation in development activities has been a major policy theme since the 1970s. The emphasis on participation represents a paradigm shift in development work, an effort to reconceptualize the way planners address people and problems. Using participatory approaches, researchers have tried to put people first (Cernea 1991), or put the “last first” (Chambers 1983), through consultation, dialogue, and collaboration. The importance of this approach in the area of health has been clearly recognized, and the 1978 Alma Alta Declaration included people’s participation as a fundamental ideal. Twenty years on, it is still considered an essential part of health development, but there is growing recognition that community participation is not a simple matter (Oakley 1989; Morgan 1993; Jewkes and Murcott 1996; Guijt and Shah 1998; Zakus and Lysack 1998).

The emphasis on participation in development work calls for a new approach to research. A whole family of techniques, known as “participatory-research” methods, has come into use. They have in common “a reorientation in the relationship between the outsider and the subjects of development activities and research: i.e. a reciprocal learning process in the relationship has replaced the one-way ‘transfer of know-how’ idea” (Mikkelsen 1995, p. 69). This reorientation is not merely about new techniques for gathering data; it concerns reciprocity within political cultures of information-sharing and dialogue (Pottier 1997).

A growing literature documents the experience of participatory health research (Nichter 1984; Seeley et al. 1992; De Koning and Martin 1996; Hardon 1998). Some of these studies refine tools for participatory research; some raise problems about what community and participation mean. This literature contains rich examples of the challenges posed by gender differences and power disparities. But what this chapter emphasizes are the more general issues about the politics of research: participatory research in health should involve dialogue about objectives for change and the research agenda, as well as involving an exchange of knowledge (Tan and Hardon 1998). These broader issues of reciprocity, agenda-setting, and mutual learning are highly relevant to ENHR.

In ENHR, community participation has been an important ideal in promoting health and development based on equity and social justice. The community is one of the three major stakeholders in ENHR, together with researchers and policymakers, and community participation is an important part of the ENHR strategy for action (TFHRD 1991).

How does community participation actually operate in the ENHR strategy? Is it merely lip service paid to a nice idea? How might it function? This chapter examines how people have defined, understood, and practiced community participation in countries trying to implement ENHR.[1] In particular, it uses the experiences of Bangladesh, Guinea, the Philippines, Trinidad and Tobago, and Uganda to highlight some of the key challenges in realizing this often difficult ideal. This chapter raises questions, addresses these questions, and proposes a reenergized concept of community participation for ENHR and for health research for development more broadly.

A basic principle of ENHR is to create a partnership of three categories of actors: policy- or decision-makers, researchers, and communities (TFHRD 1991). Yet, who and what constitutes that third party? What does participation or involvement entail? Who speaks for whom? At what levels (national, district, or neighbourhood) can communities participate? When is community participation relevant and when is it not? In setting out the goals and principles of the ENHR strategy for action, the report of the Task Force on Health Research for Development equated the community with the public, the population, people, and users of health services. The report considered community involvement important in several of the strategy’s seven elements, specifically promotion and advocacy, the ENHR mechanism, and priority-setting. However, it overlooked the potential opportunities for community participation in capacity-building and capacity-strengthening, networking, financing, and evaluation.

The Task Force saw community leaders and NGO representatives as possible prime movers, who would be able to promote dialogue at various levels of the health system and mobilize support for the ENHR concept. It recognized that political support for and the sustainability of ENHR depend in part on popular understanding and commitment. It also made community representation within the resulting ENHR mechanism a goal. The membership of the ENHR mechanisms should include representatives of public interests and concerns, such as individuals from relevant government and nongovernmental institutions, national health or population forums, women’s organizations, and other concerned groups from civil society. Moreover, “changes in the management of research,” the Task Force argued, “should go beyond cosmetic changes in the names and titles of people and programs — and beyond the token appointments of a few non-medical people to critical decision-making bodies” (TFHRD 1991, p. 45). It saw priority-setting, among the tasks of the ENHR mechanism, as the primary avenue for community involvement.

The ENHR strategy implies a new, open, and inclusive approach to setting health-research priorities. Such a strategy would take the community’s perception of the importance of various problems into account, alongside epidemiological data on their magnitude, clinical measures of impacts on mortality and morbidity, and analyses of the economic and social costs to communities, families, and individuals. Given ENHR’s focus on equity, one should weight the criteria for selecting priorities in favour of the poor, underserved, and disadvantaged sections of the population. In putting these principles into practice, however, countries have run up against the problems of who can and should speak for communities, biases about communities’ ability and willingness to participate, and impatience with the time and groundwork needed to foster an effective partnership of all three stakeholders. The priority-setting process within various countries has been, in a way, a laboratory for community participation in ENHR. As well, research projects carried out as part of the ENHR plan have offered lessons on the nature and value of community involvement.

An interim assessment of ENHR, conducted in 1996, found that “in no country [were] all three key ‘stakeholders’ (researchers, community representatives, and decision-makers) involved at every stage of the ENHR process” (COHRED 1996, p. ii). A review of country experiences in priority-setting revealed that the community is often dropped from the process in its later stages (COHRED 1997b). Considerable variation appears across countries in the extent of community involvement. Two country case studies of third-stakeholder involvement in ENHR appear in Boxes 4.1 and 4.2. They illustrate some of the many approaches various countries have taken in eliciting community participation. They also point to the interim-assessment team’s finding that “the process of appropriately involving the various groups requires considerable sensitivity, wisdom, persistence, and skill” (COHRED 1996, p. 31). This chapter addresses six questions posed by the many country experiences.

Community is often used to refer to the public, or people in general. A community may also be thought of as a geopolitical unit. The term community can refer to the inhabitants of a locality administered as a unit, such as a village. Community involves common conditions, activities, and problems and often some sense of solidarity. One can describe it in terms of social structure (for example, local councils, schools, or numbers of households). As the Uganda case study reveals, a community in the geographical sense can be taken to represent community in its broadest sense, or the public in general. Hence, the popularity of the phrase “participation of communities,” which covers both bases. Researchers may undertake consultations in a sampling of villages they think are representative of the community at large.

Examples of ENHR research suggest several other understandings of community. People who share a common interest, occupation, or cause may also be a community. Community in this sense has no specific location. Members of trade unions, linguistic or ethnic groups, religious groups, advocates of family planning, or patients suffering from the same disease, although they do not live in the same place, may nevertheless have a feeling of common identity in some respects. But they may or may not organize themselves as a group. Similarly, community may refer to people who mobilize around a given activity or resource. This is a more dynamic view, which recognizes that diverse communities come into being in various situations. What the individuals have in common may be conflicting interests in a resource, rather than a harmonious similarity of views.

In addition, researchers or policymakers may understand community to be the target group of a project or policy. When speaking about communities, frequently researchers, policymakers, or administrators refer to intended program or policy beneficiaries as “the masses,” “the grass roots,” “the poorest of the poor,” the marginalized, or the users of health services. Community may also be shorthand for the subjects of a research project (for example, pregnant teenagers, TB patients). In essence, the community is that category of people that researchers or policymakers want to do something for, to, about, or with.

Community is a broad, friendly term, and loose concepts can be useful. But they can also become superficial and contribute to fuzzy thinking. For future ENHR work, it is imperative to clearly articulate what is meant by a community while taking a pragmatic and context-sensitive approach to conceptualizing it. Within such an approach, community is what community does. Community should be defined for a purpose and in relation to other stakeholders in a particular situation.

Community involvement can take various forms, including co-option and compliance, consultation, cooperation, colearning, and collective action (Cornwall 1996, p. 96) (see Box 4.3). In Uganda, for example, community consultation informed the national priority-setting process, and projects at the district and village levels involved cooperation and colearning. The question one needs to address in ENHR is what kinds of involvement are useful, efficient, or valuable and in what kinds of situations. It may well be that communities are more interested in the opportunity to learn from, and use, research than in carrying it out. Yet, researchers rarely give feedback on their results to the subjects themselves or to a broader public. It is all too common to hear remarks like “a professor came here and took my urine — but we never heard anything more about it.”

According to a linear and mechanical model of community participation, communities articulate their problems and help to carry out policy-relevant research. This “classic” approach has many variations (see Box 4.4), with participation occurring in various degrees of intensity and in diverse phases of the research. Most importantly, however, effective involvement is a matter of reciprocity and continuing dialogue, one in which participation takes various forms and influences change in several directions. People need information about research and policy if they are to be stakeholders in ENHR. Researchers have to work with the media, advocacy groups, health workers, and relevant organizations to make it meaningful for the community to participate in the sense of colearning and collective action.

[1] The chapter is based largely on the report of the Council on Health Research for Developmemt’s Working Group on Community Participation, which undertook a review of community participation in the ENHR experience of five countries (COHRED 2000b).

Document(s) 8 of 21