Collaboratively Describing Community-Informed Social Drivers of Health for Patients Living with HIV: From Patient Perspectives to the Electronic Health Record - Human Immunodeficiency Virus (HIV) was diagnosed in 30,635 people in the U.S. in 2020, with about half of people with HIV (PWH) retained in care. HIV health outcomes are impacted by the circumstances in which a person lives and the wider set of social forces that shape a person’s life known as social determinants of health (SDH). Providers can supplement missing or coarsely defined SDH data from structured electronic health record (EHR) sources with clinical notes. Indigenous, specifically American Indian and Alaska Native (AN/AN), PWH have unique histories and sociopolitical conditions that contributes to SDH factors not captured by generic SDH categories. However, culturally congruent Indigenous SDH (ISDH) are not well understood in terms of 1) categorical definitions, 2) discussion in clinical notes, and 3) their predictive power for HIV outcome modeling. In this K99/R00 application, we propose building community collaborations and leveraging EHR data to elucidate how ISDH are defined and can be deployed within the clinical setting. In the K99 phase, we will collaboratively define ISDH with AI/AN PWH through qualitative interviews. In the R00 phase, we will use natural language processing to extract ISDH from clinical notes and measure their predictive power for modeling health outcomes such as retention in care and future risk of HIV. Our specific aims are: (1) describe ISDH through collaborations with AI/AN PWH (n=20) and health organizations; (2) identify ISDH in clinical notes AI/AN patients (n=30,097); and (3) measure the predictive power of ISDH with HIV health outcomes for AI/AN PWH (n=199) and AI/AN patients at risk for HIV (n=359). The training objectives of this project include developing competencies in qualitative methods and data analysis, community-based participatory research approaches, and building strong, reciprocal relationships with Indigenous communities and health organizations. The long-term training goal is to support Dr. Bear Don’t Walk to transition to faculty and build an independent research program. Dr. Bear Don’t Walk seeks to lead an interdisciplinary team of quantitative and qualitative health researchers, clinicians, and Elders, committed to developing analytic methods to better understand indicators, behavioral, and lifestyle characteristics, and other causes of health disparities, with a focus on community engagement. To ensure success for the planned research and training, a multidisciplinary mentorship team with a breadth of expertise, stellar mentorship records, and established, well-funded research programs will advise Dr. Bear Don’t Walk. Additionally, the research and training will be conducted at a world-renowned university and academic medical center with exceptional community engagement resources, and biomedical informatics research expertise. The proposed research is both significant and innovative because it elucidates ISDH from three complimentary views on how ISDH are: 1) conceptualized and defined by Indigenous PWH, 2) understood and discussed by clinicians in the clinical note, and 3) associated with important health outcomes for PWH in the EHR.
