My Voice, Our Stories. Events that Incorporate Authenticity, Unique Experience, and Inclusivity to Generate Qualitative Data to Help End the HIV Epidemic

Abstract Information: While medication and lab monitoring undoubtedly improve the health outcomes for most people, a myriad of factors influence the extent to which people are ready and willing to accept risks associated with healthcare, despite evidence of life saving benefits. Time and time again, medical distrust has been documented within entire communities and persists today. Trauma experiences can further influence how people perceive medical services as well as willingness to be retained in care as well. The degree to which traumas and other factors weigh on individuals and communities is mostly invisible. As a result, most medical interventions rely on quantitative data to describe effectiveness of interventions and programs, when entire communities are missing from the denominator. Notwithstanding the dedication and passion of quality individuals, these biases lead to the development of ill-fitting interventions and those that seek to solve the wrong problem. To ensure that healthcare interventions are inclusive, it is necessary to develop a deeper understanding of the lived experiences of the people we serve. Qualitative data that focuses on lived experience can provide richness and context towards variables that impact health and/or access to the healthcare system. My Voice Our Stories (MVOS) is rooted in the concepts of community-based participatory research, evidence-based co-design, and implementation science. Mixed methods data analysis was leveraged to identify specific needs, particularly unmet needs, that drive excellent and equitable outcomes. With these methods deeply nuanced contexts around the lives of individuals and dynamics present in communities that lead to quantifiable outcomes are identified. Public health and academic centers aided in identifying a population, geography, and issue of focus for our analysis. The decision is made using available quantitative data that indicate emerging trends of risks present. My Voice, Our Stories was designed as a quality management component of the Ending the Epidemic plan in New Jersey to inform improvement throughout the entire healthcare system. Storytelling projects offer a unique solution to this challenge by creating sources of valid mixed-methods data for analysis when specific steps are taken to generate stories and carefully code the stories for useful qualitative artifacts that speak to a given issue. Participants engage in trauma-informed storytelling workshops that are expected to yield 100 interviews and 50 stories from LGBTQ+, BIPOC, aging, and wellness communities. Key opinion leaders are gathered to examine storytelling frames that are appropriate to develop stories that speak to the issue of focus using a trauma informed lens. For example, harm reduction stories are generated by asking participants about the intersection of comfort, safety, celebration, and excess. Issues related to LGBTQ+ identity stigmas are generated by asking about heroes, public vs private identities, and sources of support.