Ambulatory Pediatrics
Volume 7, Issue 3 , Pages 247-252 , May 2007

Community Engagement in Epidemiological Research

  • Jessica N. Sapienza, MHS

      Affiliations

    • National Institute of Health, Bethesda, MD
    • Corresponding Author InformationAddress correspondence to Jessica Sapienza, M.H.S., Committee Liaison Officer, The National Children’s Study, National Institute of Child Health and Human Development, National Institutes of Health, 6100 Executive Boulevard, Room 5CO1, Bethesda MD 20892.
  • ,
  • Giselle Corbie-Smith, MD, MSc

      Affiliations

    • Departments of Medicine and Social Medicine, The University of North Carolina, Chapel Hill, NC
  • ,
  • Sarah Keim, MA, MS

      Affiliations

    • National Institute of Health, Bethesda, MD
  • ,
  • Alan R. Fleischman, MD

      Affiliations

    • National Institute of Health, Bethesda, MD
    • Albert Einstein College of Medicine, New York, NY.

Received 27 March 2006 ,Accepted 8 January 2007.

References 

  1. Parkin RT. Communications with research participants and communities: foundations for best practices. J Expo Anal Environ Epidemiol. 2004;14:516–523
  2. O’Fallon LR, Dearry A. Community-based participatory research as a tool to advance environmental health sciences. Environ Health Perspect. 2002;110(Suppl):155–159
  3. Leung MW, Yen IH, Minkler M. Community-based participatory research: a promising approach for increasing epidemiology’s relevance in the 21st century. Int J Epidemiol. 2004;33:499–506Epub: 2004; May 20
  4. Corbie-Smith G, Moody-Ayers S, Thrasher AD. Closing the circle between minority inclusion in research and health disparities. Arch Intern Med. 2004;164:1362–1364
  5. Kmietowicz Z. MRC cleared of unethical practices. BMJ. 1998;316:1625
  6. Centers for Disease Control and Prevention (CDC). The National Center for HIV, STD, and TB Prevention. Tuskegee timeline. Available at: http://www.cdc.gov/nchstp/od/tuskegee/time.htm. Accessed October 20, 2005.
  7. Caplan A, Edgar H, King P. Twenty years later: the legacy of the Tuskegee Syphilis Study. Hastings Cent Rep. 1992;22:29–32
  8. Israel BA, Parker EA, 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
  9. 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: http://nationalchildrensstudy.gov/research/study_plan/vanguard_sites.cfm. Accessed May 15, 2005.
  10. Branum AM, Collman GW, 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
  11. Israel BA, Schulz AJ, Parker EA, et al. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173–202
  12. Children’s Health Act (Public Law 106-310 Sec. 1004), October 17, 2000. Available at: http://thomas.loc.gov/cgi-bin/bdquery/z?d106:HR04365:=m&. Accessed October 20, 2005.
  13. Lo B, Adgate JL, 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 (Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families). 2005;Available at: http://www.iom.edu/report.asp?id=29871. Accessed September 20, 2005
  14. National Heart, Lung, and Blood Institute. Framingham Heart Study. Available at: http://www.nhlbi.nih.gov/about/framingham/. Accessed October 21, 2005.
  15. Department of Health and Human Services, National Institutes of Health, National Heart, Blood, and Lung Institute. Jackson Heart Study. Available at: http://www.nhlbi.nih.gov/about/jackson/. Accessed October 19, 2005.
  16. Proceedings of a conference on successful models of community-based participatory research. Washington DC. Research Triangle Park (NC): National Institute of Environmental Health Sciences; 2000;85
  17. Israel B, Schulz A, Parker E. Community-based participatory research: engaging communities as partners in health research. Washington D.C: Community-Campus Partnerships for Health’s 4th Annual Conference; 2000;April/May
  18. Smith M. Community-based epidemiology: community involvement in defining social risk. J Health Social Policy. 1998;9(4):51–65
  19. Levy D, Brink S. A change of heart: how the people of Framingham, Massachusetts helped unravel the mysteries of cardiovascular disease. New York: Knopf; 2005;258
  20. 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. Bethesda, MD: Office of Women’s Health Research, National Institutes of Health; 2003;p. 141–142
  21. Hardy JB. The Collaborative Perinatal Project: lessons and legacy. Ann Epidemiol. 2003;13:303–311
  22. Wyatt SB, 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
  23. National Institutes of Health (US) [NIH]. NIH guidelines on the inclusion of women and minorities as participants in research involving human subjects. Bethesda (MD): NIH; 1994;Mar. Available at: http://grants.nih.gov/grants/funding/women_min/women_min.htm. Accessed 2006 Sept 13
  24. Dimitropoulos L, Pringle C. Final report National Children’s Study focus groups-follow up (EPA, RTI Work Assignment Number. 02-01. RTI Project No. 08601.001.001). 2004;Available at: www.nationalchildrensstudy.gov. Accessed October 21, 2005
  25. Wyatt SB, Winters K, Watson C. Strategies for minority recruitment in the National Children’s Study: issues of trust. Bethesda, MD: White Paper. National Children’s Study; 2005;NIH, NICHD
  26. Wendler D, Kington R, Madans J, et al. Are racial and ethnic minorities less willing to participate in health research?. PLOS Medicine. 2006;3(2):e19;0201-0210
  27. Centers for Disease Control and Prevention (CDC)CDC/ATSDR Committee on Community Engagement. Principles of community engagement. 1997;Available at: http://www.cdc.gov/phppo/pce/index.htm. Accessed July 12, 2005
  28. RFPNIHNICHD. National Children’s Study. 2004;Available at: http://www.nationalchildrensstudy.gov/research/study_plan/vanguard_sites.cfm. Accessed August 5, 2005
  29. NIHNICHD. Recruitment, retention, and community engagement in the National Children’s Study (National Children’s Study). 2006;Available at. www.nationalchildrensstudy.gov. Accessed May 29, 2006
  30. Juengst ET. Commentary: what “community review” can and cannot do. J Law Med Ethics. 2000;28:52–54
  31. Weijer C. Benefit-sharing and other protections for communities in genetic research. Clin Genet. 2000;58:367–368
  32. Weijer C, Emanuel EJ. Ethics (Protecting communities in biomedical research). Science. 2000;18:289;1142-4
  33. McQuiston C, Parrado EA, Martínez AP, et al. Community-based participatory research with latino community members: horizonte latino. J Prof Nurs. 2005;21:210–215
  34. Proposed policy statement to APHA from the Community-Based Public Health Caucus. “Support for community-based participatory research in public health”. Available at: http://mailman1.u.washington.edu/pipermail/cbpr/2004-September/000092.html. Accessed September 4, 2005.
  35. Hatch J, Moss N, Saran S, et al. Community research: partnership in black communities. Am J Prev Med. 1993;9(suppl):27–31discussion 32-4
  36. Caldwell CH, Zimmerman MA, Isichei PA. 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
  37. Bonham VL, Nathan VR. Environmental public health research: engaging communities. Int. J. Hyg. Environ Health. 2002;205:11–18
  38. Fernandez CV, Kodish E, Weijer C. Informing study participants of research results: an ethical imperative. IRB. 2003;25:12–19

PII: S1530-1567(07)00008-1

doi: 10.1016/j.ambp.2007.01.004

Ambulatory Pediatrics
Volume 7, Issue 3 , Pages 247-252 , May 2007