Engaging community to support HIV prevention research

Abstract

Abstract.  Actively engaging communities in effective partnerships is considered critical for ethically robust and locally relevant HIV prevention research. This can be challenging in developing countries that have little prior experience in this area. This paper summarizes processes and lessons learnt while setting up the Community Involvement Plan of National AIDS Research Institute, Pune, India. Formal partnerships were established with voluntary agencies. The focus was on using strategies adapted from participatory learning and action techniques. The community program was implemented through peer educators specifically identified from the communities where partner non-governmental organizations function. At the grass root level, peer educators imparted education to the common people about research studies and helped to implement community based recruitment and retention activities. The focus was on facilitating periodic interaction between the outreach workers of the research team and the peers and modifying the strategies till they were found locally implementable and appropriate. Through adequate time investment, mutually beneficial and respectful partnerships with community based organizations and grass root level workers, the community became actively involved in clinical research. The program helped in developing a sense of partnership among the peers for the research conducted by the research organization, widening the net of community education and identification of research participants. By building trust in the community and implementing research within an ethical framework, culturally sensitive matters were appropriately addressed. The community involvement process is long, laborious and ever-evolving. Effective community engagement requires institutional leadership support, adequate funding and commitment by researchers. It is possible to sustain such a model in a resource limited setting.   

Key words: Community involvement, community advisory board (CAB), HIV prevention, partnership, research, trial, NGO

Keywords

• Community involvement, community advisory board (CAB), HIV prevention, partnership, research, trial, NGO

References

1. 1. Green LW, Mercer SL. Can public health researchers and agencies reconcile the push from funding bodies and the pull from communities? Am J Public Health 2001; 91: 1926-1929.
2. 2. Burawoy M. Ethnography Unbound (Berkeley, University of California Press, 1991), pp 4.
3. 3. Shagi C, Vallely A, Kasindi S, et al. A model for community representation and participation in HIV prevention trials among women who engage in transactional sex in Africa. AIDS Care 2008; 20: 1039-1049.
4. 4. Sahay S, Mehendale SM. Lessons learned from Pune, India. In Community Involvement in Research: Lessons learned from HIV Prevention Trial Network. Pub: Family Health International, Research Triangle Park, North Carolina. February 2006.
5. 5. Sahay S, Mehendale SM. India’s National AIDS Research Institute and Local Communities collaborate for transparency and equity. In: Recommendations for Community Involvement in National Institute of Allergy and Infectious Diseases HIV/AIDS Clinical Trials Research. NIAID, 2009, pp 52 -53.
6. 6. Wendler D, Krohmal B, Emanuel EJ, Grady C; ESPRIT Group. Why patients continue to participate in clinical research. Arch Intern Med 2008; 168: 1294-1299.
7. 7. UNAIDS. 2007. Good Participatory Practice: guidelines for biomedical HIV prevention trials. Joint United Nations Programme on HIV/ AIDS, UNAIDS.
8. 8. Appadurai A. Disjuncture and difference in the global economy. Public Culture 1990; 2: 1-24.

9. 9. UNAIDS. 1999. Best Practice Collection. From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA). UNAIDS.
10. 10. Lo B, Bayer R. Establishing ethical trials for treatment and prevention of AIDS in developing countries. BMJ 2003; 327: 337-339.
11. 11. Emanuel EJ, Wendler D, Grady C. What makes clinical research ethical? JAMA 2000; 283: 2701- 2711.
12. 12. Wood S, Friedland B, McGrory CE. Informed Consent: From Good Intentions to Sound Practices. A Report of a Seminar. New York, NY: Population Council; 2001.
13. 13. Forbes A, Sylla L, Yassky R. The First 55 Steps: A Report of the Microbicide Development Strategy’s Civil Society Working Group. Washington DC: Global Campaign for Microbicides. February 2008.
14. 14. Mehendale SM. Behavioural and Social Science Research in Support of Phase III Microbicide. In Proceedings of the workshop on “Socio-Behavioural Aspects of Microbicide Trials for HIV Prevention” Organised jointly by Indian Council of Medical Research, New Delhi and Microbicides Development Programme, UK New Delhi, India, December 5-6, 2006, Indian Council of Medical Research, New Delhi Microbicides Development Programme, UK. pp. 57.
15. 15. Sahay S. Community involvement and education in Phase I AIDS vaccine clinical trial. In Proceedings of the workshop on “Socio-Behavioural aspects of microbicide Trials for HIV prevention” Organised jointly by Indian Council of Medical Research, New Delhi and Microbicides Development Programme, UK New Delhi, India, December 5-6, 2006, Indian Council of Medical Research, New Delhi Microbicides Development Programme, UK. pp. 44.
16. 16. Wilson W, Kirkendale S. Community Involvement in Research: Lessons learned from HIV Prevention Trial Network. February 2006; Family Health International, Research Triangle Park, North Carolina.
17. 17. McQueen MK, May M. Partnering for care in HIV prevention trials: A How to manual. 2008; NIAID, HPTN, USAID and FHI.
18. 18. National Bioethics Advisory Commission. Ethical and policy issues in international research: clinical trials in developing countries. Bethesda: National Bioethics Advisory Commission, 2001.
19. 19. Nuffield Council on Bioethics. The ethics of research related to healthcare in developing countries. London: Nuffield Council on Bioethics, 2002.
20. 20. Council for International Organizations of Medical Sciences. International ethical guidelines for biomedical research involving human subjects, revised draft. Geneva: CIOMS, 2002.
21. 21. Centers for Disease Control and Prevention. Building community partnerships in research: recommendations and strategies. 1998; Atlanta: CDC.
22. 22. Joy L, Bennett S. Process Consultation, Systemic Improvement of Public Sector Management, Management Development Programme. United Nations Development Programme: New York, 1994; 33-56.
23. 23. Peavey F. 'Strategic questioning, an approach to creating personal and social change', in Peavey, F., By Life's Grace, Musings on the Essence of Social Change, 1994. New Society Publishers, Philadelphia.