Millie Nattimba, Research Uptake manager with ReBUILD‘s team from Makerere University School of Public Health, starts getting to grips with the tricky issue of ethics in research uptake activities, after another interesting session at the ResUpMeetUp Symposium and Training Exchange in Nairobi. Millie is part of the 8-strong team from ReBUILD attending ResUpMeetUp, from all ReBUILD’s partner countries.
While we are still struggling to understand what research uptake really entails, how to do it effectively and how to measure its impact; the matter of ethics has reared its fierce head. At the ongoing ResUpMeetUp Symposium and Training Exchange in Nairobi, brilliant discussions are going on, on what is known and unknown in the area of research uptake. One matter with not-so-much known in terms of how to handle it is ethical review for research uptake products.
This issue first popped up in Monday’s parallel session on Multimedia, arising out of photos and videos that featured (i) a young HIV-positive boy living on his own, and (ii) a recovering mentally-ill person and poor resident of a community in South Africa. The issue generated quite a debate during the parallel session, and continued in the plenary discussions the next morning.
While research projects include (sometimes) a research uptake plan in their research protocols for ethical review, it was not clear in the meeting what research uptake teams do when the specifics begin to form. Do video scripts and story lines get ethical clearance before recordings are done? What about the matter of interviewing research participants with mental disorders? Are they able to understand the process of informed consent? In the matter of children living with HIV and living on their own, who consents on their behalf? Should one seek separate ethical clearance to conduct a video interview or is a consent form on its own enough?
Is digital story telling (where the research participant tells his/her story in digital format (pictures and illustrations/drawings) part of the overall research process for which ethical clearance has been obtained, or a separate process for which ethical clearance should be separately obtained? Chances are that many institutions do not actually seek ethical clearance for such processes and products.
Some of these issues may be explored more deeply at one of tomorrow’s training sessions, being run by Sarah Ssali and Nick Hooton, on “Identifying and managing opportunities for ‘user-voice’ as part of research uptake strategies”.
In any case, this seems to be the beginning of what promises to be an interesting, timely and quite frankly intimidating discussion.