A Multidisciplinary Community-Based Participatory Research Approach to the Development of a Protocol for Incorporating HIV-Positive Patients' Life Narratives into the Electronic Health Record

Group leaders: Dr. Pamela Schaff and Dr. Suad Kapetanovic

Project Summary:

Psychosocial factors, including HIV stigma, continue to contribute to poor highly active antiretroviral therapy (HAART) adherence, increased viral resistance, and poor health outcomes for individuals living with HIV. It is increasingly well-recognized that innovative community-based psychosocial interventions are needed to improve HIV-positive patients’ health outcomes. The field of narrative medicine provides guiding principles for designing healthcare practices that integrate patients’ unique life values and narratives into clinical practice. As a widely used virtual team platform, the electronic health record (EHR) is uniquely situated to implement narrative medicine-based interventions into the clinical setting, helping to bring interdisciplinary healthcare teams together to facilitate dialogue with and about patients.

This team proposed an implementation science research project mobilizing a multidisciplinary community-based participatory research (CBPR) team to explore how the EHR can be leveraged to introduce HIV-positive patients’ life narratives into team-based clinical practice. The research team is comprised of clinicians from the Maternal, Child, and Adolescent/Adult Center for Infectious Disease and Virology (MCA), community members who receive care at the MCA, most of whom live with HIV, narrative medicine experts, and professors and students from the Keck School of Medicine of USC (KSOM). Establishing a sustainable CBPR team inclusive of both MCA clinicians and community members is crucial not only to ensuring that the ultimate service proposed by the research team meets community members’ unique needs, but also to empower community members in the medical milieu and creating opportunities for dialogue between healthcare practitioners, community members, and medical educators.