Behavioral Health Professionals' Perceptions on Patient-Controlled Granular Information Sharing (Part 1): Focus Group Study

Abstract

Background: Patient-controlled granular information sharing (PC-GIS) allows a patient to select specific health information “granules,” such as diagnoses and medications; choose with whom the information is shared; and decide how the information can be used. Previous studies suggest that health professionals have mixed or concerned opinions about the process and impact of PC-GIS for care and research. Further understanding of behavioral health professionals' views on PC-GIS are needed for successful implementation and use of this technology. Objective: The aim of this study was to evaluate changes in health professionals' opinions on PC-GIS before and after a demonstrative case study. Methods: Four focus groups were conducted at two integrated health care facilities: one serious mental illness facility and one general behavioral health facility. A total of 28 participants were given access to outcomes of a previous study where patients had control over medical record sharing. Participants were surveyed before and after focus groups on their views about PC-GIS. Thematic analysis of focus group output was paired with descriptive statistics and exploratory factor analysis of surveys. Results: Behavioral health professionals showed a significant opinion shift toward concern after the focus group intervention, specifically on the topics of patient understanding (P = .001), authorized electronic health record access (P = .03), patient-professional relationship (P = .006), patient control acceptance (P < .001), and patient rights (P = .02). Qualitative methodology supported these results. The themes of professional considerations (2234/4025, 55.5% of codes) and necessity of health information (260/766, 33.9%) identified key aspects of PC-GIS concerns. Conclusions: Behavioral health professionals agreed that a trusting patient-professional relationship is integral to the optimal implementation of PC-GIS, but were concerned about the potential negative impacts of PC-GIS on patient safety and quality of care. © Julia Ivanova, Tianyu Tang, Nassim Idouraine, Anita Murcko, Mary Jo Whitfield, Christy Dye, Darwyn Chern, Adela Grando.