Support Team - HSR symposium Liverpool - Giving communities a voice through research

In a satellite session organised by SPHIP in the HSR symposium, around 60 participants had a vibrant discussion about community participation in research and providing community organisations evidence for lobby and advocacy to improve health. There was an open (fish bowl) discussion, after introductions by three partners in the SPHIP programme. The lively session brought experiences from Latin America, Asia, Africa and Europe.  The main conclusion was that if researchers are willing to collaborate intensively with community organisations, they can make an impact on health policies and practices. 

Summary of the discussion in the session giving communities a voice through research

The SHARE project in Bangladesh presented its approach to involve communities through making health data accessible to the public via the Ministry of Health website. The programme trains communities in the analysis of data and organises a think tank with community support groups to interpret the information. The project helped developing the MOH health information system, with features aimed at citizen participation, such as a patient complaint mechanism using SMS and service-user hotline. 

The SPEED project in Uganda explained that the Uganda Health Consumer Organisation is member of the consortium and directly takes part in the research programme. Hence, the patient organisation has direct influence in the research topics and implementation of the Policy Implementation Barometer research. The outcomes of the research sparked a successful lobby campaign to strengthen anti-malaria home spraying interventions. 

The LEARN project from Laos presented its Policy Implementation Gap Analysis (PIGA), focusing on how (good) policies were implemented in practice. This enabled an intensive dialogue with communities and policy makers about bridging the gap between policy and practice.

A contributor from Sight Savers Nigeria told about a disappointing experience from community engagement for prevention of neglected tropical diseases (eye diseases). The challenge was to raise a community voice and achieve a shift from the implementer needs (effective implementation) to the needs of the community (integrated in community life). Listening to communities could have made the programme better accepted by the population. 

From Lebanon, a project manager told about a knowledge translation platform for the public. People could use that in debates with politicians. Politicians reacted positively to the needs of the communities because it was introduced just before elections. This shows that in lobby for health issues timing is important. 

Participants from Uganda stressed that communities must have the ownership over the health system and the service providers. They are the experts with regard to patient experiences. 

In Guatemala, a project dealt with the corruption problem by training community leaders and making them rights-holders. They addressed special needs of community groups to ensure their participation, e.g. offering childcare for participating women. The result was an increased accountability of the health care providers. They even managed to change personnel because of corruption practices of certain service providers.

A project in Peru addressed access problems due to power imbalances by making a risk factor assessment in the community. They developed measures addressing each risk factor, leading to better community satisfaction and reduction of some risk factors, e.g. alcohol consumption.

A contributor from Tunisia raises the problem that a failing dialogue with communities can be dangerous because it creates false hope. It is important to create tangible results. On the other hand, participation of community already is a value in itself, argued the presenters from Laos.

A project manager from Nigeria reported on a positive experience from a social mapping exercise. They engaged community leaders in a transcend walk. Later, community leaders took part in the distribution of medicines together with health workers.

A contributor from South Africa complained that research protocols are often too restrictive. Research questions should be changing because the assumptions of the researcher will change when engaging the community. 

A participant from Haiti stressed that it is important to connect research community to local community and health care delivery. There is a responsibility to disseminate the findings among the target community, not only have them published in peer-reviewed journals which are inaccessible to the community. 

Key points raised in the session 

• In community engagement, health researchers have to accept that communities do not always have health as a priority; other concerns may prevail. This requires flexibility from researchers.
• At the same time, many solutions for health problems must come from other sectors, so in formulating research question those sectors have to be consulted.
• For prevention of major health problems, it is important to coordinate with other sectors for reducing health risk factors (transportation, alcohol consumption…) 
• “Communities” do not exist. Society consists of many different groups, with maybe different interests. Participatory action research must be inclusive and ensure that the different interests are being covered. Approaching community groups and asking who has interest in the topic may uncover groups that researchers had overlooked.
• An assessment of power imbalances in the society can help to understand access problems.
• In participatory action research it is still too often “them” = communities and “we” = health care providers. However, health workers are also part of communities. Looking for common values and interests can be more helpful than thinking in dichotomies. 

Lessons and recommendations

• It is essential to complete cycles of policy formulation – implementation – evaluation, whereby more attention is given to how policies affect communities and what works (or not). Not rushing into formulating new policies without analysing why previous ones did not work.
• Knowledge translation and advocacy of research become more and more important. It should go further than producing a policy brief or document; it requires from researcher to work hand in hand with community groups.
• Participatory research starts with listening before starting the research. Even the research topic and the research question should be open for discussion. Lessons learned during the research may require adjustments in the methodology.  This requires flexibility to adjust research in the process. Creating ownership and building trust are essential elements. Researchers must be accountable to communities. They must make data available to groups from whom information was drawn.
• Capacity of communities and researchers has to increase to learn each other’s language, and to establish a permanent dialogue. Action research is more than a questionnaire design or incidental meeting, it is a mentality shift in how to conduct research (co-ownership) and lobby for results (making effects visible for the general public).
• Funding action research requires flexibility (see research recommendations). Demanding fixed protocols and rigid outcomes, does not help in building trust between researchers and communities. Adjustments are all in the game.
• Soft outcomes also count: if communities have gained more self-confidence, more capacities to analyse and express themselves and dialogue with decision makers, it is important, even if no other direct impact is visible.