Community engagement is not disaster prevention, but a disaster management plan.

-- Morenike Ukpong-Folayan, FWACS

In an interview on behalf of IFARA at CROI 2017, Morenike Ukpong-Folayan spoke with Mark Hubbard and Stacey Hannah about addressing community concerns regarding medical research. The Good Participatory Practice (GPP) guidelines were initially developed for biomedical HIV prevention research. That first edition was then discussed with users around the globe, eventually resulting in version 2. This second edition broadened the scope to include policymakers, funders and others. GPP therefore now uses the term "stakeholder engagement."

Unlike Good Clinical Practice and Good Laboratory Practice guidelines, the GPP are not legally enforceable. Rather, they serve as a "comprehensive, structured and strategic ... scaffold" to be adapted to the specific research that is conducted, Mark Hubbard said. Groups in South Africa are trying to incorporate these guidelines into the ethics reviews of clinical trials. However, it is important to ensure that GPP does not simply become a list of checkboxes to be ticked off, but remains a guide to meaningful engagement.

The guidelines, along with training materials, are available on the AVACS website.

Watch the video to learn more:

About the panelists:

  • Morenike Ukpong-Folayan, M.B.A., B.Ch.D., FWACS, New HIV Vaccine and Microbicide Advocacy Society, Lagos, Nigeria, moderator.

  • Mark Hubbard, Tennessee Association of People With AIDS, Nashville, Tenn.

  • Stacey Hannah, AVAC: Global Advocacy for HIV Prevention, New York, N.Y.

The video above has been posted on TheBodyPRO.com with permission from our partners at the International Foundation for Alternative Research in AIDS (IFARA). Visit IFARA's website or YouTube channel to watch more video interviews from the conference, as well as earlier meetings.

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