JMIR Publications

ABSTRACT

Background:

Granular information sharing studies rarely use actual patient electronic health record (EHR) information. In a previous study, behavioral health patients categorized their own EHR data into sensitive categories (e.g. mental health) and chose which care team members (e.g. pharmacists) should have access to those records. In this study, behavioral health professionals are provided access to the outcomes of a previous patient study to better understand the perspectives of health professionals on patient-controlled granular information sharing.

Objective:

Assess behavioral health professionals’: (1) perspectives on understanding and opinions about granular information sharing; (2) accuracy in assessing redacted medical information; (3) reactions to patient rationale for health data categorization, assignment of sensitivity, and sharing choices; and (4) recommendations on how to improve the process of granular health information sharing.

Methods:

Four two-hour focus groups and a pre- and post-survey were conducted at two integrated health facilities. During the focus groups, outcomes from a previous study on patients’ medical record sharing choices were shared. Thematic analysis and descriptive statistical analyses were conducted.

Results:

Twenty-eight professionals were initially unaware of or provided incorrect definitions of granular information sharing (56.0%). After having access to outcomes from a previous patient study, professionals increased their mixed perspectives (21.4% to 37.1%) on granular information sharing. A majority (81.3%) identified that key medical data had been redacted from the study case. Many (66.1%) stated they did not understand patient rationale for categorization or medical sharing preferences. Finally, participants recommended that a variety of educational approaches be incorporated to inform patients about granular information and health record sharing processes.

Conclusions:

This study provides detailed insights from behavioral health professionals on patient-controlled granular information sharing. Health professionals accurately identified information gaps resulting from patient-directed data redaction, improved in their overall concept comprehension, underscored the fine line between patient safety and patient rights, and expressed a commitment to help patients appreciate the risks and benefits associated with granular information sharing. Outcomes will inform the development, deployment and evaluation of an electronic consent tool for granular health data sharing.