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. 2022 Apr 20;9(4):e21208.
doi: 10.2196/21208.

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

Julia Ivanova  1 , Tianyu Tang  2 , Nassim Idouraine  3 , Anita Murcko  3 , Mary Jo Whitfield  4 , Christy Dye  5 , Darwyn Chern  5 , Adela Grando  3
Affiliations

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

Julia Ivanova et al. JMIR Ment Health. .

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.

Keywords: behavioral health professional; electronic consent tool; electronic health record; granular information; granular information sharing; integrated health care.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Focus group flow. Section themes are shown on the left with representative questions for each section on the right (numbered). This figure was adapted from Ivanova et al [27].
Figure 2
Figure 2
Emergent themes and subthemes from focus group thematic analysis on patient-controlled granular information sharing (PC-GIS). There were a total of 4025 codes.
See this image and copyright information in PMC

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