In the past the general public was seen as a subject of research. Researchers would ask people to provide information needed for their study. This attitude is changing. Increasingly, the public is seen as an active partner in the study of societal issues. They are seen to have more to contribute to research than data alone.
A young woman affected by endosulfan poisoning in Padre village, Kerala
Here’s more from Sylvia de Haan (COHRED), Samuel Anya (CIAM), Paul Bloch (DBL) and Ayo Palmer (CIAM).
In recent years, the public’s role in research is receiving increasing political attention and recognition. In 2008, the Final Declaration of the Global Ministerial Forum on Research for Health, called upon all partners and stakeholders; ‘To ensure civil society and community participation in the entire research process, from priority setting to the implementation and evaluation of policies, programmes, and interventions; and to support civil society in advocacy to key decision-makers, including politicians, for increased investment in and commitment to research for health’ . In support of this statement, the Forum adopted a Call for Civil Society Engagement in Research for Health . This was tabled by 20 civil society representatives.
This international political support is based on evidence that the public makes valuable contributions to health research. Often these contributions happen through civil society organisations. Their involvement varies from influencing specific health programmes and health policies to attempting to influence national policies for research. Examples from India, Bolivia and the United States illustrate this.
In the state of Kerala (India), a local health professional noticed increased health problems in his community that he related to exposure to Endosulfan, a pesticide sprayed aerially on cashew nut plantations. The Centre for Science and Environment (CSE), an Indian civil society organisation, collected the evidence that Endosulfan levels in the blood of the population in a village in Kerala were far above acceptable limits. Armed with this information, the affected community went to court and secured a ban on the use of the pesticide in the state .
In Bolivia, an NGO named El Programa de Coordinación en Salud Integral (PROCOSI), works to improve housing conditions as a measure to prevent Chagas disease. The bug which transmits the disease-causing parasite was seen as a good luck omen by the community, rather than as a public health risk. Community based research carried out by PROCOSI brought this situation to light. Together with community groups, priorities were set and suggested practices for reducing the impact of Chagas in affected communities were discussed. This was combined with education on the use of local resources (i.e. a tiled roof) in the fight against the vectoriii.
In the US, the NGO Research!America, works to increase funding for health research and to motivate and empower the public to support and call for research in areas where more attention is needed. Research!America succesfully lobbied for an increase in the government’s national research budget. Findings from some of Research!Amercia’s surveys illustrate the supportive attitude of Americans towards health research. For example: 67 per cent of those surveyed are willing to pay $1.0 more per week in taxes for additional medical research, and 95 per cent indicated that it is important to conduct health research to understand and eliminate health differences within the population .
Inspired by these and other practical examples, the Call for Civil Society Engagement in Research for Health identifies strategies and actions that government, academia, funding agencies and civil society organisations can apply to strengthen civil society engagement in health research (see box).
For health workers and other health professionals there are clear benefits to using research in day-to-day practice. Through their exposure to people’s health problems on a daily basis, health professionals are well placed to identify knowledge gaps, and shape research questions and agendas. They can also collect and help interpret data so that results improve the quality of health services, facilitate understanding of health behaviour, and can help improve access to health services.
In a situation where health care provision takes priority over health research for many health professionals, civil society organisations are an important partner in obtaining and using the information needed to improve service delivery. A good partnership between civil society organisations and health professionals can provide health workers with better data to manage their day-to-day challenges.
Strategies for civil society engagement in research for health
Governments to:
- Develop legal and policy directions that specify citizen’s rights to have a say in research.
- Coordinate the other actors in research, facilitate partnership building;
- Facilitate inclusive agenda setting for research and encourage civil society participation in this process.
Research institutions to:
- Adjust institutional policies to facilitate civil society engagement within their research programmes;
- Provide training for researchers and civil society partners;
- Develop clear partnership arrangements;
- Play a key role in developing the research agenda, and work with civil society in this process.
Funding institutions and development agencies to:
- Provide planning grants, training grants, and long term funding to civil society partners;Set funding criteria that
- ensure a focus on collaboration with civil society for part of their funding schemes.
Civil society organisations to:
- Develop networks of civil society organisations to create a stronger voice to influence policies, strategies and agendas of other actors;
- Engage with media to disseminate information to the public about the benefits of research;
- Highlight priorities and real needs of populations, and use this to contribute and influence the agenda setting process;
- Identify their own capacity building needs and ensure staff training where needed.
Sylvia de Haan (COHRED – Council on Health Research for Development, Switzerland)
Samuel Anya (CIAM – Public Health Research and Development Centre, The Gambia)
Paul Bloch (DBL – Centre for Health Research and Development, Denmark)
Ayo Palmer (CIAM – Public Health Research and Development Centre, The Gambia)
Download this article as a PDF (135 KB)
Filed under: Public engagement in health research Tagged: | health research, participatory research, public engagement
