Document(s) 9 of 21

The level of community involvement in planning and action may be national, district, subdistrict, or neighbourhood. It varies within various ENHR contexts. At the national level, the community may comprise national or international development NGOs, advocacy or pressure groups, support groups, television viewers, or readers of newspapers. At this level, community is often another term for civil society, the general public, or users of health services. At the district or subdistrict levels, the community may comprise local officials, health workers, grass-roots workers from large NGOs, community-based organizations, religious leaders, or a focus group drawn from various neighbourhoods in a district. At the neighbourhood level, planning and action may involve women who use certain water sources, members of a religious congregation, or residents of the catchment area of a health facility. Often community participation takes place at multiple levels.

Thinking about the levels of community participation raises the issue of representation. Who represents the community at a national priority-setting workshop or a village meeting? Who speaks and who is mute? In Bangladesh, officials from NGOs and various interest groups represent communities in the ENHR working group and national forum. In one view, such representation ensures community participation in the ENHR process; in another, “those are just politicians — they don’t represent the people!” (see Box 4.5). There are no easy answers. All representation is partial, but it should be meaningful.

Tokenism can be found both in the selection of representatives and in the ways they participate. “Dragging community representatives along as proud exhibits of an inclusive process — without a genuine say — demeans the whole process of participation” (COHRED 1999, p. 2).

Commentators have said and written much about the importance of reaching the “real grass roots” and the “poorest of the poor.” Indeed, this is critical to ENHR and equity-oriented development. The other two stakeholder groups have sometimes lost sight of the fact that ENHR inevitably challenges the priorities of traditional research communities; the politics of power is such that the voices of the poorest people, who bear the greatest burden of disease, are least audible. The other ENHR partners must, at the very least, ensure that they do not drown out those voices with their own.

The people whose work brings them into daily contact with marginalized groups are often, in practice, the ones who represent their interests to researchers and policymakers. It is important to determine whether the parties engaged in this activity are the best to reach the desired goals in a particular situation.

Organizations are one sort of party to speak for the marginalized or poorest of the poor. In a number of African countries, religious missions and NGOs working in health have traditionally played a strong role in providing improved access to health services to the poorest sections of the community. They, along with many other organizations, may be well poised to advocate equity in health on behalf of their clients or target groups (Jareg and Kaseje 1998).

Elected or appointed officials (in particular, middle- and lower level officials) may also be legitimate representatives and spokespeople for their communities. Even when there is doubt about this, it is usually advisable to try to include such officials. From one point of view, health workers are part of the communities in which they work and are well placed to represent the people and problems they confront every day; from another, they are themselves a community. One needs to remember that their interests may not be exactly the same as those of their patients, although they may have a good understanding of the health needs of the community.

Community workers recognize the importance of local opinion leaders. Opinion leaders not only speak for and represent the community but also exert power and influence — sometimes because they are wealthier, control important resources, or are more educated and articulate, but often because of personal qualities like moral authority, intelligence, or energy. Researchers sometimes see opinion leaders as a problem in community-based projects: one research project in Guinea excluded local leaders from focus-group discussions because they tended to dominate the discussion (Haddad et al. 1998). But another project in the same country emphasized how important it is to use local leaders as conduits for reaching the project target group (Sylla and Diallo 1999).

In many countries, women’s voices are seldom heard in public gatherings. Men speak for the women. Where the men are more educated and have more time and better contacts with influential people, men are more likely than women to represent their community and participate in research in all the various ways that people can. This can be disadvantageous for women and impractical insofar as women’s views are relevant to the problem under investigation. But there can also be a positive side to involving men more thoroughly in health issues, especially where researchers and policymakers have tended to see family health as the sole responsibility of mothers.

When researchers and policymakers address some people and not others as representatives of communities, they may strengthen existing forms of organization or help to create new ones. Addressing problems of inequity in health means asking whose voice is not being heard and striving to include it in health and development discussions. Without such voices, discussions of equity may be abstract and academic. Long-term field researchers or thoughtful service providers may be helpful in pointing out who would be likely to be silent. More importantly, one needs to create windows to view local realities from the national level: “Local experience provides a constant point of reference for monitoring the move toward equity, and should be firmly linked to national priority setting processes, resource allocation for research, and information dissemination” (COHRED 1999, p. 5). Establishing a strong ENHR portfolio of community-oriented research projects provides the widest of windows possible. In future, national research-coordinating mechanisms need to establish guidelines or a policy on the use of participatory methods of research or on encouraging community participation in ENHR projects. At present, few country ENHR mechanisms have set out criteria on community participation for use in evaluating projects.

A distinction is often made between applied and basic research. The assumption is that community participation is mainly relevant to applied research. It is perhaps easiest for people to see some potential or relevance of research for their lives when the problems occur at the level of experience, such as accessing health services and feeding children, rather than at the level of microbiology or pharmacology. But here, too, researchers and policymakers need to show greater open-mindedness in deciding what community participation means (see Box 4.6).

Operational studies and action research have tended to lend themselves best to community participation. They are as much about taking action to solve problems as doing research in the strict academic sense. Systematic attempts to find new ways to manage problems follow joint explorations of local conditions by community members and researchers. This kind of learning for a purpose makes sense to the research subjects.

Epidemiological and survey studies have been seen to offer little scope for community participation. Sometimes researchers train members of the community as enumerators. But beyond being dutiful respondents, community members are generally not involved. There are, however, exceptions that point to the need to reevaluate this view. Community Information, Empowerment, Transparency International, for example, has successfully involved community members as coresearchers in the conduct of sentinel community surveys, which combine qualitative and quantitative data from household questionnaires, reviews of institutional data, key-informant interviews, focus groups, and geographic information systems (Andersson 1996).

Whether on health economics or perceptions of diarrhea, social-science research is not necessarily operational research. In health-systems research, policy analysis, and community studies, researchers usually do the planning and data-gathering. The subjects of the research do not become coresearchers. (In fact, in ethnographic research, the idea is that the researcher participates in people’s projects, rather than they in the researcher’s.) Still, researchers can ask themselves whether their work is relevant to anyone outside of the academic community. Identifying an interested group and communicating research findings to create interest are also ways of creating a relationship with the third stakeholder in ENHR.

Basic or clinical research on specific diseases remains the most common type of health research in many countries. What kinds of community involvement, if any, can happen here? Lay people may help to collect biomedical data, and they may even take part in analyzing it. In a community-based malaria-intervention project in the Philippines, for example, lay people learned to identify and collect certain types of mosquitos and helped to collect and read blood smears (Batangan and Ujano-Batangan 1999). The Consumer Network of the Cochrane Collaboration affords an example of another avenue for community participation in clinical research (see Box 4.7).

Primary health-care workers, as a community, may also be an important group to communicate with about disease research. In Trinidad and Tobago, researchers worked with local health workers to develop treatment guidelines for common diseases. In some countries, advocacy and support groups are in place for people with chronic diseases or disabilities — HIV–AIDS, diabetes, heart disease. Involvement with such groups may also afford opportunities for community participation. Fundamentally, however, community participation rests on the relationship between researchers and communities and the expectations of each for the research process.

Community demand and the duration of research projects are the two most important dimensions of relationships between communities and researchers. Most health research is short term. Researchers working with a patient group or geopolitical unit are happy if they finish their data collection and analysis before their funding ends. Because the time frame is short, there is usually little reciprocity in this type of relationship. The researcher has no obligation to the community in the long run. Although communities can be involved, the researchers have limited opportunity for a continuing dialogue with subjects. Of course, researchers can use what they learn in a dialogue with another community. But most often, they feel they have met the ethical obligation to disseminate the results of their research when they report to their sponsors, colleagues, or perhaps a national institution.

Some research projects are embedded in a long-term relationship with a community (Das Gupta et al. 1997). This may be the case where research stations and community health training have been established. The International Network for Demographic Evaluation of Populations and Their Health, for example, brings together longitudinal research projects based at 20 field sites in sub-Saharan Africa (Tollman and Zwi 2000). A series of research projects may be linked to a long-term epidemiological study, with researchers following cohorts over many years. These sorts of research offer better opportunities for people to get to know about the research. They know where they can find the researchers again. Often these are the sites where people receive health-care services, so they associate the research with some kind of benefit to their community.

Communities do not usually spontaneously ask to become involved in research. It is a fundamental fact about the relationship between researchers and communities that researchers generally take the initiative. Communities — or the public in general — are seen as the ultimate beneficiaries of research, but not as immediate users who might actually request it (COHRED 2000e). Yet, this would happen more frequently if frameworks were in place to facilitate contacts and acquaint communities with the potential uses of research.

Development projects are probably the most important users of research in many countries. Where there is a high dependence on development assistance, the initiative to commission a study often comes from the funders. Occasionally, workers involved in local development efforts request technical support to carry out studies, as did those involved in the Pallisa Community Development Trust project in Uganda (Okurut et al. 1996). In either case, communities are users of research to the extent that they link the creation of knowledge to the solution of concrete problems.

A user orientation toward research has to be sensitive to community problems and interests, particularly areas in which specific groups might see a need for the research. Health workers may want to systematically gather information on a problem arising in the course of their work. Advocacy groups may be interested in research as a basis for legislative or administrative change. In South Africa, the Reproductive Rights Alliance presented research results to the Parliamentary Portfolio Committee on Health to support its argument for legislative change (see its website at http://www.healthlink.org.za/rra). In many countries, one sees a growing number of support or interest groups with a focus on particular diseases or conditions: people with AIDS or other chronic diseases, disabilities, or problems with alcohol or drugs. The Diabetes Association of Trinidad and Tobago had research topics it wanted studied; it knew that research had been done in their country on this priority health problem and wondered why no researcher had ever contacted it.

The issue of how researchers and communities relate to each other is partly a question of frameworks and institutions. It is not necessarily the case that one overall national coordinating body will have responsibility for fostering such relationships. Part of the task of an ENHR mechanism may be to identify frameworks to support contacts between the two parties and strengthen communities’ capacities to use research results. Existing community health-research and training programs would be an obvious place to start. Such programs should be in place to prepare future health researchers “to encourage dialogue with local government and community leaders in developing community-based, partnership-driven research” (COHRED 1996, p. 33). Box 4.8 provides an example of a medical-school curriculum that incorporates training in participatory development. Other examples are the faculties of medicine at Suez Canal University, Egypt (Nooman and Mishriky 1991), University of Ilorin, Nigeria (Ogunbode 1991), and Chulalongkorn University, Thailand (Suwanwela 1991).

Although researchers and communities may share a long-term commitment to improving health — even to equity in health — in the short term they usually have divergent interests and expectations. Researchers see their work as one of creating new knowledge, and they feel they are only accountable to their colleagues and sponsors. For them, some degree of community participation generally facilitates the research in terms of compliance and logistics. Many appreciate the ways that community involvement poses challenging and socially relevant problems. But it also demands resources, especially time, to carry on a dialogue and attend to the interests of community members, which often conflict with those of the research. It is troublesome that community expectations do not correspond to research goals and methods. Researchers need to understand that this is not just an obstacle, but an issue deserving careful scholarly attention. Box 4.9 describes an NGO–community partnership built on the researchers’ long-term engagement and sensitivity to the complex social and cultural dynamics of a community.

By and large, communities are less interested in knowledge for its own sake; they are concerned with its possible relevance to their lives. Countries show great differences in the extent to which members of the public understand the concept of academic research, even in a country like Trinidad and Tobago, where the level of education is reasonably high. Nevertheless, community members often have positive expectations (see Box 4.10). Initially, they may hope for material benefits and expect the government or the researchers to provide solutions to the problems under investigation. They desire to help themselves, their families, or others, and some have a genuine wish to gain new skills and knowledge. Insofar as researchers are significant outsiders or powerful elites (doctors, professors), community members may see an opportunity to gain influence through cooperation with them — at least, it is better not to be on their bad side.

Community members have trade-offs to make as well. The research makes demands on their time and material resources, often offering them no compensation. If their efforts seem to bear no fruit, they may feel bitter or lose interest. At worst, they may feel exploited. At the very least, they may feel that nothing came out of the research. They may not, for example, even hear anything about what the researchers found out. Although not all research projects can feed back results to their research subjects directly, one needs to recognize an issue of public accountability and communication that is too often neglected here.

In addition, some people have the simplistic view that researchers can identify the problems and expectations of communities once and for all. But those who have worked with communities emphasize that community participation develops over time; expectations change as communication develops.hA fresh perspective on community participation in ENHR

The experience of most countries with ENHR, to date, has been with the difficult work of promotion and advocacy, establishing an ENHR mechanism, creating or reshaping the national health-research agenda, and mobilizing financial support for the mechanism and the agenda. However, as the ENHR process matures and coordinating bodies for national health research settle into the core business of working toward equity in health and linking research to action (COHRED 2000e) they will clearly need to reframe third-stakeholder involvement in these goal-oriented terms, rather than in the activity-oriented terms of the original seven-element ENHR strategy. Specifically, it may be more fruitful to think about how communities can participate in linking research to action than about how they can become involved in promotion and advocacy or priority-setting. Both these strategic activities are about, for example, fostering ongoing dialogue among the various partners to link research to action.

A first step in working toward equity in health will be to bring the dimensions of inequity to the attention of the public. Communication of research findings about health inequities will therefore be essential. But what kind of communication is most meaningful and to whom? Traditionally, epidemiological surveys have been powerful ways for advocates to garner support for views when presenting arguments to politicians — numbers are seen as facts. Yet, research with strong elements of community participation may be equally convincing, or even more effective in motivating change. Communication that incorporates the voices of marginalized or struggling people, especially if they are active agents looking for allies, gives a human dimension to the movement for equity. Journalists are experts at bringing out the personal touch of a pitiful case, but this is not what is needed. Rather, communication should show the dimensions of inequity as experienced and managed by a community of social actors.

Focusing on the involvement of marginalized groups in research can bring them more actively into the struggle for equity. It is not just a question of giving vulnerable groups opportunities to improve their health, but also one of supporting them in creating these opportunities. The problem is that often the most vulnerable people are least likely to participate. Creating equity means helping these people find allies in a community of action and advocacy — it also means empowering the communities, themselves, to define their health needs and seek solutions to them.

Linking research to action is often seen as the affair of researchers and policymakers. It is assumed that policy is the key to action and that research must feed into policy. The communities need to play a more active role in the process, and researchers and policymakers should not see them merely as “consumers” of research or targets of action.

Community participation can be a potent force for action in at least three ways:

• Community involvement encourages research for action, as communities are most interested in research relevant to the problems they experience. They want useful research, and they are particularly keen on operational research, in which the researchers implement and test new knowledge.

• An educated public or community can push policymakers to take action. Public pressure is important in democratic societies, even in undemocratic ones. When dissemination of research results creates awareness of health problems, inequities, and possible solutions, it can contribute to a momentum for change.

• Participation can empower people to act on their own behalf. To the extent that community involvement helps people to articulate their problems, to learn, acquire, and practice new skills, and to make allies, they are better able to be active and responsible. This does not mean that communities should solve their own health problems (the health and well-being of the citizenry is as much a responsibility of the state as of the individual, family, or community). However, it should be clear that people are not simply passive recipients of health services or wholly dependent on the knowledge of experts.

Many researchers think that community participation is about listening to “the people” (or the organizations that purport to represent their interests). To truly make a difference in linking research to action and in working toward equity in health, the relationship between communities and the other stakeholders must be one of continuing dialogue. It is by reciprocal communication, not by one-way listening, that researchers, communities, and other partners can build coalitions. 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. In this sense, learning and innovative coalitions reflect the newly emerging paradigm in health research (Pellegrini et al. 1998; Higginbotham et al. 2001) and knowledge production (Gibbons et al. 1994), in which “real-world problems” demand transdisciplinary perspectives and action. Learning and innovative coalitions defy single-discipline and single-stakeholder solutions. They recognize multiple sites of knowledge generation, many of which are outside of traditional institutions like universities (Harrison and Neufeld 2000). These coalitions require greater flexibility and a more long-term approach. Instead of thinking in terms of conventional individual research protocols with set objectives, researchers may have to think in terms of phases or a series of projects or a framework for continuing exchange.

Attempting to establish dialogue puts an obligation on researchers to communicate about their research in appropriate ways. Disseminating findings should be a part of ENHR. One possibility would be to make this a requirement of an ethical code, like informed consent or protection of research subjects. Another strategy would be to better equip researchers to perform this task by training them in some of the necessary communication skills. In many countries, collaboration with the media is the most common strategy. Workshops can be held for journalists, and they can be hired to help publicize research findings. Whatever strategy the researchers adopt, they should have channels to allow community members to express their views and ask questions. Where a project has access to the media and good communication infrastructure, it is possible to use radio call-in shows, telephone hotlines, and health-advice columns to answer community members’ questions. Face-to-face communication would be the primary strategy in many settings, but a single dissemination workshop is not enough. Researchers need to meet communities in a variety of situations over time, so that they have real opportunities to learn to communicate.

ENHR is based on the principle that researchers are accountable to the society in which they work. Researchers should learn of and discuss this ethic when they are learning research skills. Putting medical students through a community medicine program is a start, but it is not sufficient. University curricula should include training on relationships between researchers, policymakers, and the public. Future researchers should learn about the dilemmas of accountability (To whom? About what?) and about the various ways of relating to various kinds of communities.

Civil-society organizations may have special roles to play in coalition-building. They have an institutional character that persists over time and provides a framework. If they emphasize internal dialogue, as well as external communication between leaders and researchers, they can be genuine representatives in a coalition. Structures need to be in place to encourage relationships between organizations and researchers, and here policymakers can take steps to establish an organ or channel of communication.

One possibility is what is known in some North American and European countries as “science shops.” They function as a link between universities and communities in larger society: noncommercial organizations define problems for research and contact the science shop, which in turn links graduate students and their supervisors with these potential users of research. In other words, the science shop recognizes communities as consumers of research and gives young researchers the opportunity for apprenticeships with organizations in need of their services. At the University of Copenhagen, the science-shop office is run by experienced students, who make contacts with all kinds of agencies, from patient organizations to sections of local government. They help students negotiate research projects and ensure that the results are disseminated to clients in useful ways.

In the past decade of ENHR, the ideal of collaboration among communities, policymakers, and researchers was phrased in terms of links between stakeholders. The term stakeholder suggests that a party has an interest in an enterprise, something to gain or lose. The term iron triangle of stakeholders (researchers, policymakers, and community) conveys a sense of rigidity, as if their interaction comprises a series of linear communications and trade-offs between the three groups. Coalition has another flavour. It is more action oriented, suggesting issue-based alliances, debates, and negotiation between disparate parties. Coalition members sometimes have conflicting interests, but commitment to a coalition implies an effort to accomplish something together, despite differences. In the next decade of health research for development, it may be most fruitful to think of community–researcher relations as coalitions for defining problems and learning to solve them.

Document(s) 9 of 21