Community Advisory Board model for Unitaid-funded projects

© Frontline AIDS/Peter Caton/2018

Key information

  • Organisation: Frontline AIDS (year 1) – INPUD (year 2)
  • Country: Global
  • Region: Global
  • Stage of innovation: Stage 2: Proof of concept developed
  • Start date: August 2024
  • End date: Ongoing
  • Type of innovation: Conceptual innovation: new ways of looking at problems, challenging assumptions, or both
  • Funders: Unitaid

Summary of intervention

Although community inclusion is often talked about, marginalised communities are often not adequately involved in project design and implementation. This is especially true in medical, research interventions, often seen as ‘too technical’ for community input. ‘Inclusion’ is often hierarchical, with community voices heard, but not as loudly as academic or medical experts’. Feedback is often not acted upon as key decisions are already made.

The Community Advisory Board (CAB) addresses this by involving communities, not just at a micro level in the field, but in global platforms whereby community members from multiple countries join group discussions — a step before the ‘typical’ community focus group discussions. This is innovative on two levels: it enables community representatives in different countries to learn from each other; and they can amend draft research protocols before focus group discussions and submission to WHO for ethical clearance.

As an example, for the Low Dead-Space Syringes/Needles (LDSS/N) protocol, master protocols were amended to remove urine testing (except for pregnancy tests) as part of the Long-Acting Depot Buprenorphine (LADB) study, as the CAB did not feel that abstinence from street drugs was a useful indicator of the treatment’s success. Instead, CAB members preferred to focus on participants’ quality of life and participation in the workforce. Some questions were also removed as they were felt to be too intrusive and onerous. Community members in Egypt heard the experiences of community members in Ukraine who had taken LADB. Community representatives are therefore involved in the full project lifecycle, rather than just the usual more extractive, focus group discussions.

learnings

Community members have reported on their experiences, learning and collaboration with members in other countries at two international conferences and also internally within Unitaid.

The project is at a very early stage of implementation, therefore, the full results are yet to be seen.

next steps

This process will continue throughout the project lifecycle, with CAB members continuing to hold project implementers accountable and reviewing study results.

sustainability

The CAB model has been held up as an example of best practice within Unitaid, and included in the 2024 Executive Director’s Report to the Board, stating specifically that Unitaid strongly advises potential grantees to include something similar in their proposals, saying that the CAB approach has “proven to have the potential to create more inclusive and informed community responses.”

For more information click HERE.

 

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