Processes and outcomes of developing a continuity of care document for use as a personal health record by people living with HIV/AIDS in New York City

Purpose: To describe the processes and outcomes of developing and implementing a Continuity of Care Document (CCD), My Health Profile, as a personal health record for persons living with HIV (PLWH) in an HIV/AIDS Special Needs Plan in New York City.

Methods: Multiple qualitative and quantitative data sources were used to describe the processes and outcomes of implementing My Health Profile including focus groups, Audio Computer Assisted Self Interview (ACASI) surveys, administrative databases, chart abstraction, usage logs, and project management records. Qualitative data were thematically analyzed. Quantitative data analytic methods included descriptive and multivariate statistics. Data were triangulated and synthesized using the Reach, Efficacy/Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) Framework.

Results: Reach - SNP members are predominantly African American or Hispanic/Latino and about one-third are female. A larger proportion of African Americans and smaller proportions of Hispanics/Latinos and Whites were trained to use My Health Profile.Efficacy/Effectiveness - CCDs were produced for 8249 unique members and updated on a monthly basis, 509 members were trained to use My Health Profile. Total number of member logins for 112 active users was 1808 and the longest duration of use was 1008 days. There were no significant differences between users and non-users of My Health Profile in clinical outcomes, perceptions of the quality of medical care, or health service utilization. Adoption -My Health Profile was well-matched to organizational mission, values, and priorities related to coordination of care for a high-risk population of PLWH. Implementation - Pre-implementation focus group participants identified potential barriers to use of My Health Profile including functional and computer literacy, privacy and confidentiality concerns, potential reluctance to use technology, and cognitive challenges. Key strategies for addressing barriers included a dedicated bilingual coach for recruitment, training, and support; basic computer and My Health Profile training; transparent audit trail revealing clinician and case manager access of My Health Profile, time-limited passwords for sharing My Health Profile with others at the point of need, and emergency access mechanism. Maintenance -My Health Profile was integrated into routine operational activities and its sustainability is facilitated by its foundation on standards for Health Information Exchange (HIE).

Conclusions: Although potential barriers exist to the use of personal health records (PHRs) such as My Health Profile, PLWH with complex medical needs, low socioeconomic status, and limited computer experience will use such tools when a sufficient level of user support is provided and privacy and confidentiality concerns are addressed.