Background Patient-directed selection and sharing of health information “granules” is known as granular information sharing. In a previous study, patients with behavioral health conditions categorized their own health information into sensitive categories (eg, mental health) and chose the health professionals (eg, pharmacists) who should have access to those records. Little is known about behavioral health professionals’ perspectives of patient-controlled granular information sharing (PC-GIS). Objective This study aimed to assess behavioral health professionals’ (1) understanding of and opinions about PC-GIS; (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 to improve PC-GIS. Methods Four 2-hour focus groups and pre- and postsurveys were conducted at 2 facilities. During the focus groups, outcomes from a previous study on patients’ choices for medical record sharing were discussed. Thematic analysis was applied to focus group transcripts to address study objectives. Results A total of 28 health professionals were recruited. Over half (14/25, 56%) were unaware or provided incorrect definitions of granular information sharing. After PC-GIS was explained, all professionals demonstrated understanding of the terminology and process. Most (26/32 codes, 81%) recognized that key medical data had been redacted from the study case. A majority (41/62 codes, 66%) found the patient rationale for categorization and data sharing choices to be unclear. Finally, education and other approaches to inform and engage patients in granular information sharing were recommended. Conclusions This study provides detailed insights from behavioral health professionals on granular information sharing. Outcomes will inform the development, deployment, and evaluation of an electronic consent tool for granular health data sharing.
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.
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.
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