COHRED Record Papers

Acknowledgement

This Collaborative Paper is jointly authored by Ricardo Batista,Martine Berger, Michael Devlin, Sylvia de Haan, Mouazamma Djamalova, Carel IJsselmuiden,Zarina Iskhakova, Kausar Khan, Bebe Loff, Caroline Nyamai-Kisia, Robin Vincent, Susan Reynolds Whyte, Itai Rusike, Erika Silva, KR Thankappan, Vibha Varshney.

The COHRED Record Paper Series publishes authored and collaborative papers. Authored papers are attributed to the people leading the analysis, concept development and writing. Collaborative papers are the result of interactions between groups of professionals that have been convened by COHRED to improve understanding on a specific area of research for health, where all participants have made an equal contribution.

COHRED Record Papers

COHRED Record Papers are published as a record of significant meetings, interactions, or activities coming from COHRED’s work with partners to support improved national health research systems. The concepts and thinking presented in Record Papers are intended to progress into action, peer reviewed papers, in the COHRED series or in the international scientific literature. Each COHRED Record Paper is subject to internal review by COHRED colleagues and partners involved in the meeting, interaction or activity.

Learning Spiral

The COHRED Learning Spiral is COHRED’s process of dialogue and critical review by groups of health research experts – from South and North – of approaches to how developing countries can improve their health research systems. Specific learning points in the Spiral are opportunities for publications and lessons to emerge from this experience. Record Papers are one point in this ongoing learning process.

ISBN

92-9226-005-7

Keywords

communities and health research/community influence on health research/community engagement in health research/health research tools and processes for communities/ communities and health research Bolivia/communities and health research Cambodia/communities and health research India/communities and health research Kenya/communities and health research Pakistan/communities and health research Tajikistan/communities and health research Zimbabwe/health research for development/research for health/COHRED/Council on Health Research for Development

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© Council on Health Research for Development (COHRED) 2006

CONTENTS

Key messages from the consultation

Executive summary

1.Introduction and background

2.Setting the scene: concepts and definitions

2.1 Defining the community

2.2 From co-option to collective action: what is participation?

2.3 Who is the policy maker?

2.4 Who are the researchers?

3.Case studies

3.1 Community Working Group on Health (CWGH), Zimbabwe

3.2 Environmental health concerns in India leading to demand driven research

3.3 An academic approach to community engagement from Pakistan

3.4Tajikistan – the need to take a long-term historical perspective

3.5 The People’s Science Movement, Kerala: an example of changing values and approaches to community engagement

3.6Kenya - Community engagement for better health information

3.7The Science Shop - a forum for increasing people’s demand for research

3.8Sensitizing researchers to the real needs of community – the example of sex workers

3.9 Improving housing conditions in rural Bolivia to prevent Chagas disease

4. Strategies to bring a community perspective to research for health

4.1 Strategies for mainstreaming community engagement for health research

4.2 Forming alliances – strengthening isolated communities….and researchers

4.3 Skills and pathways to create a favorable environment

ANNEX 1 - Briefing note circulated for consultation, including list of participants

Making health research work … for everyone: Communities matter!

Key messages from the consultation

The expert group noted that:

Good health research is done with the community; community research is good research; and research projects that value the importance of community engagement should be promoted.

The group examined and discussed the rich experiences of the experts around the table, and the case studies highlighted some important strategies that can be applied to strengthen community engagement in health research, focusing on forming alliances and developing capacity.

Community participation in research is usually interpreted as the participation of patients, consumers, or the public, as the subjects of research. There is not sufficient expertise and knowledge today to take action in supporting community engagement in national health research and national health research systems in developing countries.

There is experience available from developed nations, but this cannot automatically be translated to developing countries, as supporting systems (i.e.: organized civil society, press freedom, democracy) is often not sufficiently developed to support community engagement in health research. A better understanding is needed of existing practices and approaches in developing countries, and of values and principles that support community action.

A framework or approach is needed to enable countries to respond appropriately to the needs of their populations, and to better understand the importance of communities' roles in needs assessment and priority setting for health research. The central questions to be addressed include: who is influencing the research agenda and how can communities play a meaningful role in this?; and how can research be more responsive to the needs of the community?

As a next step in its learning process on community influence on health research agendas, COHRED is preparing an extensive review of literature and of existing experiences from projects and partners. This will help map the current situation, extract a set of principles and values for good community engagement in health research and use this new perspective to develop a conceptual approach that countries can use to enhance the engagement of communities in health research, health research agenda setting and health research policy making.

The approach will be used, tested and continuously updated. The learning will be structured through a series of exchanges and consultations. It is expected that this Learning Spiral will result in ideas for approaches that can be used by various stakeholders to enhance community engagement in health research.

COHRED will work to include community engagement as core element in its work and adjust its project guidelines and operating principles to reflect and support good community engagement in research for health. This includes influencing the thinking of COHRED partners and other development actors who do not yet recognize community engagement as a key factor for achieving health through research.

Executive summary

How can communities become active players in the health research process – as clients, policy shapers and as researchers?

There are many examples and much practical thinking on community engagement in research in the development context. This includes activities such as participatory research methods for rural development programmes, or environmental, social and educational projects. It is curious, in contrast, to note the dearth of substantive literature and thinking on how communities can influence national health research agendas and national health research policies in developing countries.

This paper is the first step in a process of learning and consultation for the Council on Health Research for Development (COHRED) and a number of partners that have an interest in how communities can shape national health research agendas. The paper and the ongoing investigation address the question: how can communities become active players in the health research process – as clients, policy shapers and as researchers. COHRED’s learning process on community engagement in health research started in 2005 with an expert consultation between 15 practitioners from Africa, South Asia, Europe and North and South America[1], who came together to share experiences and offer advice. Useful perspectives from outside the health sector were offered by members of an environmental NGO, two anthropologists and people experienced in running social programmes.

People in villages and specific groups in developing countries do ‘participate’ in health research. But this is primarily as providers of data for studies or as participants in trials of new medicines and health interventions.What is not considered in the picture of community engagement in health research is how the power of communities to focus national research agendas on their priorities can be harnessed, especially in developing countries, and how communities can better use and impact health research. The US and Europe have cases of communities impacting health research – increased investments in breast cancer research by the NIH in the United States is a shining example. But there are few, if any, in the south. The COHRED initiative Communities Matter! is concerned with improving the understanding of how communities can matter and become relevant players in influencing national research agendas and national research policies.

There are several documented levels of community involvement [2]:

-Co-option and compliance - people participate by being dutiful subjects of research.

-Consultation - the community is invited to present the people’s perspective on matters of interest to researchers.

-Cooperation - members of the community are involved in the planning and execution of research.

-Co-learning - the community acquires new knowledge and skills from the research.

-Collective action - together, researchers the community and policy makers, take action to bring about change.

In the first level of involvement community members are the subjects of research. The following four levels indicate an increasing level of ownership by the community, with people taking charge of their own issues.

The consultation examined several cases of how community engagement makes research work for their populations:

•Zimbabwe – Clear information helps move authorities to action.

In Zimbabwe, where the government sees NGOs as obstacles, the Community Working Group on Health (CWGH) uses the collection and dissemination of clear information on the national health care situation related to HIV-AIDS as its main force to demandgovernment action. To encourage the circulation of accurate information on the health situation, CWGH trains community groups in basic research skills. The Zimbabwe Network for Women, for example, has become a powerful group, collecting information that it shares with the authorities and the media. In some cases the government conducted ‘counter’-research in response to the information and questions from the community. CWGH comprises some 25 member organizations, which are a link between authorities and community groups and train community members in basic research skills.

•India – Environmental health concerns lead to demand driven research. The Centre for Science and Environment (CSE), an independent, public interest organization, leads the search for solutions to environmental challenges in the country. It pushes the government to create frameworks that allow communities to act on their own. With the help of CSE’s Pollution Monitoring Laboratory, Endosulfan Spray Protest Action Committee, a local NGO in Kerala could link the use of the pesticide, endosulfan to the various health problems in the area. The organisation could then lobby with the authorities to stop the use of this pesticide. Public pressure helped translate protest into policy. In Punjab, a local NGO requested help to better understand the health risks of pesticides used in cotton farming. This experience suggested the need for regular monitoring of pesticides in human bodies for the whole country and a policy to protect the people from this kind of trespass.

•Pakistan – Academics involve poor communities. This example illustrates how academia has examined ways of involving specific communities in a meaningful way. Rather than making a judgment based on economic and social indicators, researchers of the Community Health Sciences Department of the Aga KhanUniversity (Karachi) asked the poor to define what constitutes poverty, in order to create the opportunity for the community to identify health related problems that it could address together with the district health care teams.

•Tajikistan - For community consultation - ‘unlearning’ the habits of the socialist system. Under the past socialist system, the community’s role was to accept the decisions taken by the central authority. Today there are many initiatives to devolve decision making to the regional and local levels, but many local authorities find it difficult to relate to the central government. International organizations have turned to communities and NGOs in building their projects, including the conduction of surveys.

•Kenya - Bringing communities on-line as partners in providing research inputs. The NGO, AfriAfya, works with NGOs to increase communities’ involvement and access to health information. It gives NGOs working at the district level and community groups access to health data through information systems. This access allows communities to identify and address problems and see morbidity and mortality data, on a monthly basis. The advantage of involving the community in the data collection is that non-health service data, i.e. on home deliveries, are also recorded.

•Europe-US – ‘Science shops’ to increase demand for community-level information. A Science Shop is a small resource center that does research on a wide range of disciplines – usually free of charge – on behalf of citizens and local civil society. This approach is different from other knowledge transfer mechanisms as its responds directly to civil society’s needs for expertise and knowledge. It is often directly linked with civil society groups as partners and customers.

•Cambodia - Research done by community members– the example of sex workers. Much research has been done on the plight of sex workers and intravenous drug user populations. Most of these researcher-initiated activities assume wrongly that the primary concerns are HIV or Hepatitis. These communities mostly value safe working and living environments and the respect of service providers and local authorities. In this case, sex workers designed a study themselves and also conducted stakeholder interviews.

•Bolivia – Understanding local cultural values helps prevent Chagas disease.

PROCOSI, a Bolivian NGO, describes the delicate task of fighting Chagas disease, a major national health problem. The Chagas vector is seen as a good luck omen in rural areas. So a top-down public health campaign to eradicate it has little chance of gaining public support. PROCOSI involved communities in the problem solving process, resulting in a shared perception of the problem and how each household can solve it.

The expert group noted that: good health research is done with the community, community research is good research, and research projects that value the importance of community engagement should be promoted. The discussions of the case studies highlighted some important strategies that can be applied to strengthen community engagement in health research, focusing on forming alliances and developing capacity. However, it also became clear that today there is not sufficient expertise and knowledge to take action in supporting community engagement in national health research and national health research systems in developing countries. There is experience available from developed nations, but this can not automatically be translated to developing countries, as the supporting systems (for example: organized civil society, press freedom, democracy) are often not sufficiently developed to support community engagement in health research. A better understanding is needed of existing practices and approaches in developing countries, and of values and principles that support community action.

The learning exchange will in the meantime continue and engage more interested players in 2006. It is expected that this learning spiral will result in ideas for approaches that can be used by various stakeholders to enhance community engagement in health research. Communities Matter! learning spiral

The planned outcomes of this process are: the creation of an approach and examples to guide communities, community based organizations, researchers, development professionals and government officials on how to influence national health research agendas from the local perspective.

1.Introduction and background

In the health research triangle of researchers, policy makers and users/communities, the latter is often mentioned, but it is not well understood how these groups of people can have an impact on research for health. ‘Community participation in research’ is often seen as how community members should be made partners in research projects. What is not considered is how the power of communities to focus national research agendas on national priorities can be harnessed and how communities can better enhance the use and impact of health research. There are good examples of local interests influencing research agendas in the US and Europe[3], but few, if any, in the south. The initiative started by COHRED and experts from South Asia, Latin America, Africa, Europe and the United States, focuses on improving the understanding of how ‘communities can matter’ in setting national research agendas and in national health research.