Giving back to research participants

“You have been asking me questions and taking my blood for years but I do not know anything about what you have found.”

Yesterday we published an article by David Bangsberg and colleagues that describes their efforts disseminating findings to the research participants enrolled in their long-term cohort study of HIV in rural Uganda. According to the authors, the dissemination initiative was motivated by this powerful sentiment – that research participants, who volunteer their time to provide benefit but invariably assume risk, give so much but often get so little in return.

Although the notion of communicating research findings to participants, especially those from vulnerable groups, is widely talked about as best practice, it often doesn’t happen. There are sometimes logistical, confidentiality, and practical barriers to doing so.

But Bangsberg and colleagues forged ahead and the experience they describe, which resulted in a “highly rewarding” community meeting modeled after a traditional wedding event, is fascinating. They lay out the 6 steps they followed – a model that may inspire other community based researchers.

The image included here (and in the article) is a hand-print poster made at the dissemination event.