Using a three-layered approach to understand the needs for effective community engagement in HIV biomedical research in India ' Perspectives from community representatives, implementing researchers and domain experts

BACKGROUND: The success of any HIV biomedical research is primarily pillared on end-user communities' acceptance and support. However, the contours of community-research intersections are predominantly shaped by understanding and willingness of researchers and sponsors. Creating a paradigm shift requires recognition of the perspectives of key stakeholders (community, researchers, others including policymakers, bioethicists, regulators, product experts) to understand the challenges and identify opportunities. Thus, IAVI facilitated diverse discussions with an aim to capture the dynamic relationship and triangulate all views for the most impactful insights on community engagement.
DESCRIPTION: Between January and October 2021, fourteen virtual consultations were conducted in India with community representatives (N= 53); HIV researchers (N=10); national HIV domain experts and advisors (N=10) to understand the current practices and identify needs to make community engagement robust, equitable, ethical and effective. Data were analyzed using constant comparison method to identify themes. Source triangulation strengthened the validity of findings.
LESSONS LEARNED: Understanding common grounds
All the groups highlighted the need for
a) Increased and innovative efforts to strengthen science communication and augment research literacy to enable community ownership;
b) Understanding the role of connectors (who are closely knitted with the communities like community-based organisations) in bolstering trust and becoming advocates for research;
c) Leveraging digital media to facilitate better outreach, awareness and retention.
Highlighting gaps through unique lenses
'¢ Community representatives highlighted:
(a) Engagement of communities are primarily at the time of recruitment; there is a need for their early and sustained engagement throughout the research
(b) Lack of sensitivity towards community cultures, lived experiences, power dynamics, gender norms and not enough transparent communication.
'¢ Researchers stated:
(a) Limited funding for community engagement
(b) Low priority for people-centered engagement skills among researchers as other aspects of instrumental goals have precedence.
'¢ Domain Experts opined on
(a) Limited researcher capacities in simplifying science communication and sustaining engagement beyond study period
(b) Limited focus on accountability mapping and need for competency assessment frameworks for both researchers and communities.
CONCLUSIONS: The insights highlight the criticality of meaningfully engaging diverse stakeholders to co-design multi-dimensional engagement strategies and operational tool-kit to address these needs for most effective community engagement in HIV research.

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