| Literature DB >> 26126899 |
Kathleen M MacQueen1, Anant Bhan2, Janet Frohlich3, Jessica Holzer4, Jeremy Sugarman5.
Abstract
BACKGROUND: Community engagement in research has gained momentum as an approach to improving research, to helping ensure that community concerns are taken into account, and to informing ethical decision-making when research is conducted in contexts of vulnerability. However, guidelines and scholarship regarding community engagement are arguably unsettled, making it difficult to implement and evaluate. DISCUSSION: We describe normative guidelines on community engagement that have been offered by national and international bodies in the context of HIV-related research, which set the stage for similar work in other health related research. Next, we review the scholarly literature regarding community engagement, outlining the diverse ethical goals ascribed to it. We then discuss practical guidelines that have been issued regarding community engagement. There is a lack of consensus regarding the ethical goals and approaches for community engagement, and an associated lack of indicators and metrics for evaluating success in achieving stated goals. To address these gaps we outline a framework for developing indicators for evaluating the contribution of community engagement to ethical goals in health research. There is a critical need to enhance efforts in evaluating community engagement to ensure that the work on the ground reflects the intentions expressed in the guidelines, and to investigate the contribution of specific community engagement practices for making research responsive to community needs and concerns. Evaluation mechanisms should be built into community engagement practices to guide best practices in community engagement and their replication across diverse health research settings.Entities:
Mesh:
Year: 2015 PMID: 26126899 PMCID: PMC4488111 DOI: 10.1186/s12910-015-0033-9
Source DB: PubMed Journal: BMC Med Ethics ISSN: 1472-6939 Impact factor: 2.652
Ethical goals of community engagement (listed chronologically by publication date)
| Weijer and Emanuel, 2000 [ |
| Protect communities in research |
| Emanuel et al., 2004 [ |
| Minimize the possibility of exploitation |
| Increase the likelihood that the research will have a long-term impact |
| Demonstrate an awareness of and respect for cultural differences between the researchers, sponsors and communities |
| Respect for recruited participants and study populations |
| Dickert and Sugarman, 2005 [ |
| Enhance protections for communities |
| Enhance benefits for communities |
| Enhance legitimacy for the research |
| Partners share responsibility for the conduct of the research |
| Nuffield Council of Bioethics, 2005 [ |
| Enhance respect for communities |
| Tailor research to better meet the needs of communities |
| Tindana et al., 2007 [ |
| Ensure the relevance of research |
| Assess whether relevant research is culturally and practically acceptable in the context it is intended |
| Ensure that community disruption is minimized, i.e., avoiding the displacement of local medical staff from pressing local needs |
| Avoid exploitation, by ensuring a fair distribution of the benefits of research |
| Take into account the ethical hazards that may be part of the social, economic, and political landscape of the community |
| Ahmed and Palermo, 2010 (COPR) [ |
| Communities and investigators share power and responsibility equitably |
| Diverse perspectives and populations are included in an equitable manner |
| The research project results in mutual benefit for all partners |
| All partners receive equal respect |
| UNAIDS and AVAC, 2011 [ |
| Ensure the ethical and scientific quality and outcome of proposed research |
| Ensure relevance of research to the affected community |
| Ensure acceptance of research by the affected community |
| Participants in the Community Engagement Consent Workshop, Kilifi Kenya [ |
| Support research that is respectful to individuals and communities where social value is maximized |
| Critical Path to TB Drug Regimens, 2012 [ |
| Ensure that disparities and inequalities are not inadvertently replicated or reinforced |
| Ensure that power dynamics do not disadvantage some stakeholders more than others (minimize the threat of exploitation) |
| Ensure that the burden associated with TB drug trials is fully apprehended and protocols are adjusted to minimize the burden |
| Prioritize the management of stigma and involuntary isolation |
| Ensure emerging challenges are addressed in the new era of TB drug trials |
| King, et al., 2014 [ |
| Identifying and managing non-obvious risks and benefits |
| Expanding respect beyond the individual to the stakeholder community |
| Building legitimacy for the research project |
Potential indicators for evaluating the contribution of community engagement (CE) to ethical goals
| Ethical goal | Potential indicators |
|---|---|
| Broadly protect communities in research | • Procedures developed through CE exist to investigate events that have been reported indirectly, such as through a third party, taking account of confidentiality issues [ |
| Weijer and Emanuel, 2000 [ | • Procedures developed through CE exist for reporting social harms, and whether these are to be reported to sponsors, ethics committees, and regulatory bodies if not specifically required by them [ |
| • Documentation that stakeholders reflective of the potential reach of the research are identified and actively engaged, beyond individual research participants [ | |
| Minimize the possibility of exploitation | • Procedures developed through CE exist to ensure community members know where the research is being conducted and by whom [ |
| Emanuel et al., 2004 [ | • Documentation of use of appropriate mechanisms to ensure community members understand research concepts (e.g., the difference between research and clinical care) [ |
| Increase the likelihood that the research will generate fair benefits locally | • Evidence that CE empowered stakeholders to develop systems that are useful to the community, build local capacity and gain control over their lives [ |
| Emanuel et al., 2004 [ | • Evidence that community members used the knowledge gained through CE to improve community members’ health and well-being [ |
| • Research benefits identified during CE are demonstrated to accrue to research participants and participant communities [ | |
| Ensure awareness of and respect for cultural differences | • Evidence that researchers and research staff are aware of cultural differences relevant to the research and have established procedures that respect those differences and allow for them in research [ |
| Emanuel et al., 2004 [ | • Evidence that community members feel the research procedures and process was/is respectful to their culture [ |
| • Evidence of on-going relationships and open-ended discussions with key stakeholders regarding the research and whether it is respectful of cultural differences [ | |
| Ensure respect for recruited participants and study populations | • Evidence that trust between communities and investigators increases following implementation of CE [ |
| Emanuel et al., 2004 [ | • Evidence of listening to, acknowledging, and being responsive to stakeholders [ |
| Legitimacy of the engagement process | • Documentation of who in a community is engaged in deliberation and discussion about the research and the extent to which they represent the views of the larger community and relevant minority groups within communities [ |
| Dickert and Sugarman, 2005 [ | • Processes are in place to air disagreements and discuss the concerns and interests of the stakeholder community [ |
| • Documentation of clearly articulated goals for CE and tools for tracking progress in achieving those goals [ | |
| Partners share responsibility for the conduct of the research | • CAB provides documented feedback on the protocol, consent materials and/or recruitment materials [ |
| Dickert and Sugarman, 2005 [ | • Documentation that community members share suggestions for research with researchers or are comfortable with the proposed approach [ |
| • Documentation that researchers and staff respond to community input [ | |
| • Documentation that communities participate in research throughout the entire process, including determining the importance of the problem, assessing the value of the research and conducting the study [ | |
| • Documentation of substantive community contributions to the design and evaluation of the informed consent process [ | |
| • Documentation of substantive CAB member participation on protocol development teams and scientific committees [ | |
| • Procedures are in place to actively probe participants and encourage reporting of social harms [ | |
| • Documentation that CAB meeting(s) are held with community stakeholders to discuss study design, eligibility, and implementation [ | |
| • Documentation that CAB meetings are held with researchers and research staff to discuss research results and that the wider community is informed of research results [ | |
| Minimize community disruption | • Evidence that conflicts, misunderstandings, and criticisms are minimized or prevented through CE [ |
| Tindana et al., 2007 [ | |
| Ensure that disparities, inequalities and stigma are not inadvertently replicated or reinforced | • Evidence of changed norms and behaviors around disease-related stigma in the community due to CE [ |
| Tindana et al., 2007 [ | • Evidence that traditionally underserved communities increase their power as a result of CE [ |
| • Evidence that financial and other rewards of research identified through CE are shared fairly [ |