Community Engagement in Epidemiological Research


      Engaging communities has become a critical aspect of planning and implementing health research. The role community engagement should play in epidemiological and observational research remains unclear since much of this research is not directly generated by community concerns and is not interventional in nature. The National Children’s Study (NCS), an observational longitudinal study of 100,000 children and their families, provides a model to help guide the development of community engagement strategies in epidemiologic research.


      This manuscript describes community engagement activities of the NCS during the planning phases of the study.


      There are many challenges of community engagement in epidemiologic research particularly before the actual research sites are determined. After communities of interest are designated many further issues must be resolved, including: defining the specific community, determining which residents or institutions represent the identified community, and developing trust and rapport through respectful engagement.


      Community engagement is critical to the long-term success of any longitudinal epidemiologic study. A partnership with the community should be formed to ensure mutual respect and the establishment of an enduring relationship. Genuine community engagement offers the hope of enhancing recruitment, retention, and participant satisfaction.

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        • Parkin R.T.
        Communications with research participants and communities: foundations for best practices.
        J Expo Anal Environ Epidemiol. 2004; 14: 516-523
        • O’Fallon L.R.
        • Dearry A.
        Community-based participatory research as a tool to advance environmental health sciences.
        Environ Health Perspect. 2002; 110: 155-159
        • Leung M.W.
        • Yen I.H.
        • Minkler M.
        Community-based participatory research: a promising approach for increasing epidemiology’s relevance in the 21st century.
        Int J Epidemiol. 2004; 33 (Epub: 2004; May 20): 499-506
        • Corbie-Smith G.
        • Moody-Ayers S.
        • Thrasher A.D.
        Closing the circle between minority inclusion in research and health disparities.
        Arch Intern Med. 2004; 164: 1362-1364
        • Kmietowicz Z.
        MRC cleared of unethical practices.
        BMJ. 1998; 316: 1625
      1. Centers for Disease Control and Prevention (CDC). The National Center for HIV, STD, and TB Prevention. Tuskegee timeline. Available at: Accessed October 20, 2005.

        • Caplan A.
        • Edgar H.
        • King P.
        Twenty years later: the legacy of the Tuskegee Syphilis Study.
        Hastings Cent Rep. 1992; 22: 29-32
        • Israel B.A.
        • Parker E.A.
        • Rowe Z.
        • et al.
        Community-based participatory research: lessons learned from the centers for children’s environmental health and disease prevention research.
        Environ Health Perspect. 2005; 113: 1463-1471
      2. The National Children’s Study Plan. Bethesda (MD). National Institutes of Health (NIH), National Institute of Child Health and Human Development (NICHD); c200-2005. Available at: Accessed May 15, 2005.

        • Branum A.M.
        • Collman G.W.
        • Correa A.
        • et al.
        • National Children’s Study Interagency Coordinating Committee
        • Centers for Disease Control and Prevention
        • National Children’s Study Interagency Coordinating Committee
        • National Institute of Environmental Health Science
        • National Children’s Study Interagency Coordinating Committee
        • National Institute of Child Health and Human Development
        • National Children’s Study Interagency Coordinating Committee
        • U.S. Environmental Protection Agency
        The National Children’s Study of environmental effects on child health and development.
        Environ Health Perspect. 2003; 111: 642-646
        • Israel B.A.
        • Schulz A.J.
        • Parker E.A.
        • et al.
        Review of community-based research: assessing partnership approaches to improve public health.
        Annu Rev Public Health. 1998; 19: 173-202
      3. Children’s Health Act (Public Law 106-310 Sec. 1004), October 17, 2000. Available at: Accessed October 20, 2005.

        • Lo B.
        • Adgate J.L.
        • Cavanaugh G.
        • et al.
        • National Research Council and Institute of Medicine of the National Academies
        Ethical considerations for research on housing-related health hazards involving children. 2005 (Available at: Accessed September 20, 2005)
      4. National Heart, Lung, and Blood Institute. Framingham Heart Study. Available at: Accessed October 21, 2005.

      5. Department of Health and Human Services, National Institutes of Health, National Heart, Blood, and Lung Institute. Jackson Heart Study. Available at: Accessed October 19, 2005.

      6. Proceedings of a conference on successful models of community-based participatory research. National Institute of Environmental Health Sciences, Washington DC. Research Triangle Park (NC)2000 (85)
        • Israel B.
        • Schulz A.
        • Parker E.
        Community-based participatory research: engaging communities as partners in health research. Community-Campus Partnerships for Health’s 4th Annual Conference, Washington D.C2000 (April/May)
        • Smith M.
        Community-based epidemiology: community involvement in defining social risk.
        J Health Social Policy. 1998; 9: 51-65
        • Levy D.
        • Brink S.
        A change of heart: how the people of Framingham, Massachusetts helped unravel the mysteries of cardiovascular disease. Knopf, New York2005 (258)
        • Ockene J.
        Retention strategies: lessons from the Women’s Health Initiative.
        in: Science meets reality: recruitment and retention of women in clinical studies, and the critical role of relevance. Office of Women’s Health Research, National Institutes of Health, Bethesda, MD2003: 141-142
        • Hardy J.B.
        The Collaborative Perinatal Project: lessons and legacy.
        Ann Epidemiol. 2003; 13: 303-311
        • Wyatt S.B.
        • Diekelmann N.
        • Henderson F.
        • et al.
        A community-driven model of research participation: the Jackson Heart Study Participant Recruitment and Retention Study.
        Ethn Dis. 2003; 13: 438-455
        • National Institutes of Health (US) [NIH]
        NIH guidelines on the inclusion of women and minorities as participants in research involving human subjects. NIH, Bethesda (MD)1994 (Mar. Available at: Accessed 2006 Sept 13)
        • Dimitropoulos L.
        • Pringle C.
        Final report National Children’s Study focus groups-follow up. 2004 (Available at: Accessed October 21, 2005)
        • Wyatt S.B.
        • Winters K.
        • Watson C.
        Strategies for minority recruitment in the National Children’s Study: issues of trust. White Paper. National Children’s Study, Bethesda, MD2005 (NIH, NICHD)
        • Wendler D.
        • Kington R.
        • Madans J.
        • et al.
        Are racial and ethnic minorities less willing to participate in health research?.
        PLOS Medicine. 2006; 3 (0201-0210): e19
        • Centers for Disease Control and Prevention (CDC)
        • CDC/ATSDR Committee on Community Engagement
        Principles of community engagement. 1997 (Available at: Accessed July 12, 2005)
        • RFP
        • NIH
        • NICHD
        National Children’s Study. 2004 (Available at: Accessed August 5, 2005)
        • NIH
        • NICHD
        Recruitment, retention, and community engagement in the National Children’s Study. 2006 (Available at. Accessed May 29, 2006)
        • Juengst E.T.
        Commentary: what “community review” can and cannot do.
        J Law Med Ethics. 2000; 28: 52-54
        • Weijer C.
        Benefit-sharing and other protections for communities in genetic research.
        Clin Genet. 2000; 58: 367-368
        • Weijer C.
        • Emanuel E.J.
        Science. 2000; 18 (1142-4): 289
        • McQuiston C.
        • Parrado E.A.
        • Martínez A.P.
        • et al.
        Community-based participatory research with latino community members: horizonte latino.
        J Prof Nurs. 2005; 21: 210-215
      7. Proposed policy statement to APHA from the Community-Based Public Health Caucus. “Support for community-based participatory research in public health”. Available at: Accessed September 4, 2005.

        • Hatch J.
        • Moss N.
        • Saran S.
        • et al.
        Community research: partnership in black communities.
        Am J Prev Med. 1993; 9 (discussion 32-4): 27-31
        • Caldwell C.H.
        • Zimmerman M.A.
        • Isichei P.A.
        Forging collaborative partnerships to enhance family health: an assessment of strengths and challenges in conducting community-based research.
        J Public Health Manag Pract. 2001; 7: 1-9
        • Bonham V.L.
        • Nathan V.R.
        Environmental public health research: engaging communities.
        Int. J. Hyg. Environ Health. 2002; 205: 11-18
        • Fernandez C.V.
        • Kodish E.
        • Weijer C.
        Informing study participants of research results: an ethical imperative.
        IRB. 2003; 25: 12-19