Why is Community Engagement Important in your Research?

By: Paul Goulet, Chair, Providence/Boston CFAR Community Engaged Research Council

Including community members in your research is very important. Effective feedback loops allow deployment of interventions to enhance participants experience and increase engagement with research which should be a goal for all researchers. This feedback loop could potentially allow identification of problems and challenges which may act as barriers to successful completion of current or future grants/trials. Meaningful participant feedback may impact participants participation in future studies as well as inviting and recommending participation for other future studies.

The practice of providing feedback is fundamental to the ethical principal of respect for persons, to offer research/study results and treat participants in the highest regard. The offer to return research/study results to participants at completion should be based on the premise that respect for persons should continue following study closure to avoid treating participants merely as a means to an end. Other benefits of feedback to participants acts as an acknowledgement of the valuable contribution to research science that has been made by their participation. The practice of offering results should be universal regardless of the nature of the grant/study (i.e. research in the social sciences, clinical trials, health fields, etc.). The benefits of offering results are numerous.

Over the past few years I have tried to find studies that have examined researcher’s experiences or impediments they face in requesting feedback or giving feedback to study participants.  What I have found is that the most reported challenges to sharing results were potential negative emotional effect on participants, participants difficulty in understanding results and use of resources to complete dissemination of information back to participant.  There is also an uncertainty among participants as to how they might access the information regarding their participation. There is also the question of lag time between the end of participation and the availability of the results of the study.

If publication of results is to be expected participants are often unable to access published literature and need access to summary findings in formats that they can understand.  Very often researchers and participants do not speak the same language.  Participants should be informed and offered alternative ways that they can access the information regarding the particular study.

It is important that investigators/researchers decide on the appropriate timing is for reporting back after completion the study information. Different arms of the study may have different end points and therefore careful consideration should be given regarding the best time and what information is shared and communicated to participants. 

Some things to consider (They may vary according to a particular grant/study)

• What kind of feedback is wanted both by the investigator/s and by the participants?
• What is to be done with the feedback (may be useful for future grant/study funding)

Points that investigator may want to bring up to the participant: (not in any particular order)

• Your information/participation is key to our research (“you will get the reports/findings if you so choose”).
• Your participation will not be shared with any other participant
• Can we contact you regarding research findings? (Preference of contact-email, web link, publication, phone call, etc.)
• Would you like to be contacted by a research representative after study is completed?
• Invite participants to indicate if they are willing to be approached about taking part in future studies. Ask them how they would like to be contacted for future participation.
• If you have any questions (Number to contact)

Participants might have questions about what will happen to them at the end of a study or how they will be able to access the study results. You should provide participants with clear contact details so that they can seek further information either at investigator or principal investigator level depending on which is most appropriate.

If you have additional questions regarding how to engage the community in your research, please contact Paul Goulet (pbgoulet@hotmail.com) or Ray Joseph (rayj@aidscareoc.org).

Below is an interesting study regarding disseminating research findings to research participants in rural Uganda:

PLoS Med. 2013 Mar; 10(3): e1001397. Dissemination of Research Findings to Research Participants Living with HIV in Rural Uganda: Challenges and Rewards. Anna Baylor, Conrad Muzoora, Mwebsa Bwana, Annet Kembabazi, Jessica E. Haberer, Lynn T. Matthews, Alexander C. Tsai, Peter W. Hunt,  Jeffrey N. Martin, and  David R. Bangsberg. Author information Copyright and License information Disclaimer