Communtiy concerns about ethical conduct of research - Community Engagement

Between June and September, 2012, the New HIV Vaccine and MIcrobicide Research Advocacy Society conducted 3 community consultations and 2 researcher-community interface to discuss and deliberate on concerns. The groups came up with issues that can be categorised into four (i) informed consent (ii) community engagement (iii)standard of care (iv) specific community related concerns. This second piece will share with you their concerns with community engagement process in research conduct in Nigeria

2.0 Community engagement in research
2.1. Observations
• Communities are generally poorly engaged in the design and monitoring of research, but extensively engagement during the implementation.

•There is little research literacy efforts on the field. Communities therefore only respond to what researchers share with them.

•Communities are often not educated enough about the research they conduct among them.

•CSO engagement is often mistaken for community engagement.

•Security agents are not often considered as necessary representative on Community Advisory Boards engaged with research involving vulnerable communities like MSMs, FSW and IDUs.

•CSOs also conduct researches without any oversight being provided by ethics committees. This often introduces bias in the reports generated.

•Where CSOs are formally engaged on projects, Terms of References are not drawn for the group to guide their work.

• Researches are often mistaken for public health interventions.

• The community is often ‘used’ as a means of recruiting research participants. CSO engagement in research should not replace researchers’ responsibilities. Researchers should be the ones to directly engage research communities for data collection.

• Research protocols often show no evidence of community involvement in its development. Yet approvals are given by ethics committees.

• Ethics committees do not monitor researches they approve to ensure that community engagement happens in the field.

2.2. Recommendations
• Community engagement should happen throughout the lifecycle of research – from the design to the dissemination stage in line with the requirements of national ethics code and national HIV research policy.

• NGOs need to be funded to actively support community research literacy so as to promote informed community engagement with research. Researchers are encouraged to engage CSOs in all community based research as community educators. This would encourage mutual trust for the research and sustained community education on the subject matter even after the project is concluded.

• Informal community engagement is equally important but should not replace formal engagement mechanisms.

• Engagement with the communities should be an ongoing process with regular feedback mechanisms in place.

•CSO engagement should not be considered as community engagement. Researchers should work with CSO as gatekeepers only: discussion and recruitment of research participants should be done directly from the community after duly providing information to the community.

• Communities should be engaged in all forms of research. The types and level of community stakeholders to be engaged however differs with the type of research. Ethics committees need to review and monitor research protocols to ensure this happens. Researchers need to collect Memorandum of Understanding from communities as evidence of community permission to work within the communities. This MOU should be the evidence research ethics committees seek for when reviewing research protocols

• Regulatory agencies (Ethics Committee and research monitors) should use a participatory approach for the monitoring and evaluation process for research and programmes. They need to interact with research communities during their monitoring exercises to evaluate level of community engagement in the research process.

• Wide range of stakeholders should be engaged in community research implementation.

• Proper community entry processes must be done prior to commencement of research programmes.

• There should be a clear plan on how research findings will be disseminated to the research participants and the community and this should be part of the research protocol. There must be a system of monitoring that ensures it happens.

•All research should make efforts to promote research literacy. Ethics committees should see that the information sheet for all the research they approve should have an educational component. This way, at the minimum, research participants get to learn something about the research subject.

•Researchers must make efforts to keep reminding study participants engaged in drug research that such research should not be mistaken for health interventions. Efforts must be made to prevent therapeutic misconceptions.

•When researches are conducted by the community themselves, external oversight needs to be provided so as to address the potential for bias reporting by the community. This can be done through partnership with other organisations that can play this role.