Background: Though social determinants are the primary drivers of health, few studies of people living with HIV focus on non-clinical correlates of insecure and/or fragmented connections with the care system. Our team uses 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 individuals living with HIV and other invested community members to guide and inform this research. Our objective is to generate consultant-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 individuals with experience relevant to our research. We recruited a panel of consultants composed of people living with HIV and/or clinicians and individuals from agencies that provide medical and non-medical services to people living with HIV in Marion County, Indiana. To date, we have used a variety of human-centered design tools and activities to engage individuals during six sessions, with results informing our future engagement and research activities.
Results: Since the inception of the project, 48 consultants have joined the panel. Thirty-five continue to be actively engaged and have participated in one or more of the six sessions conducted to date. Consultants have 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 utilize community engagement to expand the scope of our research and find that the process provides value to both consultants and the research team. Human-centered design enhances this partnership by keeping it person-centered, developing empathy and trust between consultants and researchers, increasing consultant retention, and empowering consultants to collaborate meaningfully with the research team. The use of these methods is essential to conduct 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 consultants.
Keywords: Community advisory board; Community engagement; Community-based research; Design thinking; HIV; Human-centered design; Patient engagement; Stakeholder engagement.
According to the U.S. Department of Health & Human Services, many people living with HIV do not get the care they need to stay healthy. They may face many problems that make it hard for them to access or afford medical services. They may also have barriers such as mental health or substance use disorders, unstable housing, or unreliable access to transportation. We want to understand how these factors influence the health of people living with HIV and find ways to help them overcome these barriers and improve their health. We use information from many sources, including records from health and social service agencies, to measure services received and health outcomes. We also work with a group of people living with HIV and/or who provide support or care to people living with HIV in our community. They help us understand what is important to them, what information we need, what the results mean, and what solutions we should try. To date, there are 48 people in this group. We have hosted six meetings where we shared and discussed our findings and asked for their input. We think that involving people living with HIV and those who seek to serve them is critical to our research. These individuals with lived experience relevant to our research have given us valuable feedback and suggestions that we can use to help guide our research, making it more relevant, useful, and impactful. It can also benefit the people who participate in the community-engaged process, with the consultants learning from each other and from us.
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