Article Text

Download PDFPDF
Why We Need Community Engagement in Medical Research
  1. Jessica K. Holzer, PhD*,
  2. Lauren Ellis, MA†‡,
  3. Maria W. Merritt, PhD‡§
  1. From the *Department of Health Policy and Management, School of Public Health, Yale University, New Haven, CT; and †Department of Health Policy and Management, ‡Berman Institute of Bioethics, and §Department of International Health, Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD.
  1. Received April 3, 2014, and in revised form May 8, 2014.
  2. Accepted for publication May 14, 2014.
  3. Reprints: Maria W. Merritt, PhD, Berman Institute of Bioethics, Johns Hopkins University Bloomberg School of Public Health, 1809 Ashland Ave, Baltimore, MD 21205. E-mail: mmerrit2{at}jhu.edu.
  4. Supported by an Agency for Healthcare Research and Quality T32 training grant (HS017589-06, PI Bradley) (J.K.H.) as well as by the Johns Hopkins University Center for AIDS Research (JHU CFAR) and National Institutes of Health grant number 1P30AI094189-01A1 (PI Chaisson), with particular acknowledgment to the JHU CFAR Bioethics and Human Rights Scientific Working Group (L.E.); supported in part by the Greenwall Foundation through a Faculty Scholars Program career development award (PI Merritt) and in part by the JHU CFAR Bioethics and Human Rights Scientific Working Group (M.W.M.).These funders had no role in writing of the article or in deciding to submit it for publication.
  5. Author Lauren Ellis is a PhD student in the Bioethics and Health Policy Track of Johns Hopkins University.

Abstract

Background The medical research enterprise depends on public recognition of its societal value. In light of evidence indicating public mistrust, especially among minorities, inadequate enrollment as well as diversity of research participants, and poor uptake of findings, medical research seems to fall short of sufficient public regard. Community engagement in medical research, with special attention to minority communities, may help to remedy this shortfall by demonstrating respect for the communities in practical ways.

Approach We provided 3 case examples that illustrate how specific approaches to community-engaged research can build trust between researchers and communities, encourage participation among underrepresented groups, and enhance the relevance as well as the uptake of research findings.

Discussion A common attribute of the specific approaches discussed here is that they enable the researchers to demonstrate respect by recognizing community values and interests. The demonstration of respect for the communities has intrinsic ethical importance.

Conclusions The 2 potential outgrowths of demonstrating respect specifically through community engagement are (1) the production of research that is more relevant to the community and (2) the mitigation of asymmetry in the researcher-community relationship. We summarized practical resources available to researchers who seek to incorporate community engagement in their research.

Key Words
  • community engagement
  • medical research
  • respect
  • mistrust
  • recruitment
  • findings

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.