Why We Need Community Engagement in Medical Research

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 and diversity of research participants, and poor uptake of findings, medical research appears 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 communities in practical ways. Approach We provide three case examples that illustrate how specific approaches to community-engaged research can build trust between researchers and communities, encourage participation among under-represented groups, and enhance the relevance and uptake of research findings. Discussion A common attribute of the specific approaches discussed here is that they enable researchers to demonstrate respect by recognizing community values and interests. The demonstration of respect for communities has intrinsic ethical importance. Conclusion Two 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 summarize practical resources available to researchers who seek to incorporate community engagement in their research.

eHealth and mHealth Interventions for Ethnic Minority and Historically Underserved Populations in Developed Countries: an Umbrella Review

“…), as found by Roosa et al (2008) or in different countries such as the South Asian populations in UK, or North Africa populations in central Europe as found by Khan et al (2019) as well as Waheed et al (2015). Previous research highlights the importance of engaging communities in the research process in order to improve the quality of care (Holzer et al 2014;Eyles et al 2016). It has been suggested that recruitment and development of eHealth and mHealth interventions should be designed to systematically address the health inequalities of a wider range of minorities or underserved populations in a community (e.g.…”

Attending to the Interrelatedness of the Functions of Consent

“…Therefore, one way of assessing the adequacy of a consent process is the extent to which it expresses respect, and well as considering alternative activities that express respect. For example, the concept of respect is central to the rise of community engaged research and patient oriented outcomes research (Ross et al 2010; Holzer et al 2014. ; Woolf et al 2016).…”

Trustworthy Research Institutions: The Challenging Case of Studying theGenetics of Intelligence

“…13 This lack of trust can prevent communities from understanding the social benefits of research and prevent its members from enrolling in studies. 14 These entwined American histories-of race-based discrimination and of abuse in biomedical research-form the backdrop to Johns Hopkins's own history and context. Johns Hopkins is located in Baltimore, the sixth poorest city in the United States, with 24 percent of its adults and 37 percent of children living in poverty.…”

“…but may also help specifically to build trust, encourage participation, and promote the uptake of findings," and therefore community engagement enhances the efficacy of research affecting particular populations. 40 While community engagement has seen significant successes, it is imperfect, and its methods could be better developed and more stringently implemented. 41 Moreover, there is an unfortunate tendency for researchers and research institutions to minimize or ignore the asymmetries in power that are intrinsic to their relationships with community constituents.…”