By Racheal Ninsiima
KAMPALA — After you’ve spent months and maybe even years on your academic research and finally have it published, what’s next? Will the general public read and understand your research? Will the research sit on a shelf and gather dust or will it actually spark interest from the general public? For Dr. Emmy Okello, a consultant cardiologist and senior researcher at the Uganda Heart Institute, involving community members at all levels of the research process, and from the start is critical.
He did so and his research has thanked him for it.
When THRiVE awarded him a post-doctoral research grant to study acute rheumatic fever (ARF) in 2017, he made sure his results reached the community that stood to benefit from them. His strategy was to involve communities in Gulu and Lira districts, the study sites, to discuss the importance of this research and dispel any misconceptions. So, Dr. Okello, designed a community and public engagement (CPE) project targeting community volunteers, primary health care workers and the general public.
The objectives of his engagement included: gaining public and community acceptance for his research, gather community views to guide in study design and improve retention of study participants. To achieve this, he held radio talk shows with the area’s local leadership and organized town hall meetings with primary health care workers and community volunteers.
“Public engagement via radio helped to change community perceptions about research in general. Where people previously thought research as exploitative, they now saw it as beneficial to the individual and community,” he says.
By engaging non-scientific communities in Gulu and Lira, the researcher found, made it much easier to recruit and retain research subjects, who were children. His study enrolled 916 children to be administered penicillin injection monthly for two years. Therefore, acceptance by district and school leaders was critical to adherence and follow up. By the end of the research, his study had about 90% retention of the children recruited.
Moreover, conversations with local leaders, primary health care workers, community volunteers and parents helped Dr. Okello to generate feedback on how the study should be implemented. For example, participants watched an animated video of the entire research process before individual consents were given and this helped to modify the consenting process.
The norm in consenting is that participants are debriefed about the study and later a consent or assent form is read to them before they can sign on it.
“As a researcher, I had not foreseen that participants would request to watch a video about the research and consenting process. When they did, I had to revise my study protocol and resubmit it for approval to the Internal Review Board,” Dr Okello recalls.
Thus, by the time consent and assent was obtained, study participants were knowledgeable about the research and what was required of them.
Community and public engagement has brought out the best in Dr. Okello as a researcher. He told THRiVE that since he initiated his community and public engagement project on ARF, many community members have reached out to him, wanting to understand the disease process and how they can protect their children.
He observes that if any CPE project is to succeed, researchers ought to engage their communities early, including a representative sample of the intended study population. This allows one to receive early guidance that may help him/her to modify their study.