Unlocking Success: Community Engagement for Enhanced HIV Care Outcomes

Abstract

Background: Though social determinants are the primary drivers of health, few studies of people living with HIV (PLWH) focus on non‐clinical correlates of insecure and/or fragmented connections with the care system. Our team has used linked clinical and multisector non‐clinical data to study how residential mobility and connection to social services influence the HIV care continuum. We engage a diverse group of invested patients and community members to guide and inform this research. Our objective is to generate stakeholder-informed, research-based interventions that are relevant to the community, and to share our engagement approach and findings so that other researchers can do the same. Methods: Our research team partnered with the Indiana Clinical and Translational Sciences Institute’s Research Jam, to develop and implement a human‐centered design research plan to engage with individuals with lived experience relevant to our research. We recruited a panel composed of PLWH as well as clinicians and individuals from agencies that provide medical and non-medical services to PLWH in Marion County, Indiana. We used a variety of human-centered design tools and activities to engage individuals during six sessions, with results informing our engagement and research activities. Results: Since the inception of the project, 48 individuals have joined the stakeholder panel. Thirty-five are actively engaged and have participated in one or more of the six sessions conducted to date. The panel helped guide and prioritize analyses, aided in identification of data missing from our ecosystem, helped interpret results, provided feedback on future interventions, and co-presented with us at a local health equity conference. Conclusions: We utilized community engagement to expand the scope of our research and found that the process provided value to both stakeholders and research team members. Human-centered design enhanced this partnership by keeping it person-centered, developing empathy and trust, increasing stakeholder retention, and empowering stakeholders to collaborate meaningfully with the research team. The use of these methods is essential to conducting relevant, impactful, and sustainable research. We anticipate that these methods will be important for academic and public health researchers wishing to engage with and integrate the ideas of community stakeholders.