Barriers and Facilitators to the Collection and Aggregation of Electronic Health Record HIV Data: An Analysis of Study Recruitment Venues Within the Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN)

Abstract

Electronic health record (EHR) data can be leveraged for prospective cohort studies and pragmatic clinical trials, targeting youth living with HIV (YLH). Using EHRs in this manner may minimize the need for costly research infrastructure in service to lowering disease burden. This study characterizes HIV prevention and care continua variables and identifies factors likely to impede or facilitate EHR use for research and interventions. We conducted telephone-based qualitative interviews with National Experts (n = 10) and Key Stakeholders (n = 19) from subject recruitment venues (SRVs), providing care services to YLH and youth at risk for HIV. We found 17 different EHR systems being used for various purposes (e.g., workflow management and billing). Thematic content analysis of interviews highlighted six broad categories of perspectives on barriers to and facilitators of EHR use: specific variable collection, general use barriers, and facilitators, general data collection barriers and facilitators, EHRs for surveillance and research, EHRs for personnel and resource management and capture of HIV specific variables. These findings may inform implementation strategies of future studies, in which we conduct routine monitoring of the youth HIV prevention and care continua using EHRs and test an eHealth intervention.