State of the art and a mixed-method personalized approach to assess patient perceptions on medical record sharing and sensitivity.

OBJECTIVE: Sensitive health information possesses risks, such as stigma and discrimination, when disclosed. Few studies have used a patient's own electronic health records (EHRs) to explore what types of information are considered sensitive andhow such perceptions affect data sharing preferences. After a systematic literature review, we designed and piloted a mixed-method approach that employs an individual's own records to assess content sensitivity and preferences for granular data sharing for care and research. METHODS: A systematic literature review of methodologies employed to assess data sharing willingness and perceptions on data sensitivity was conducted. A methodology was designed to organize and categorize sensitive health information from EHRs. Patients were asked permission to access their EHRs, including those available through the state's health information exchange. A semi-structured interview script with closed card sorting was designed and personalized to each participant's own EHRs using 30 items from each patient record. This mixed method combines the quantitative outcomes from the card sorting exercises with themes captured from interview audio recording analysis. RESULTS: Eight publications on patients' perspectives on data sharing and sensitivity were found. Based on our systematic review, the proposed method meets a need to use EHRs to systematize the study of data privacy issues. Twenty-five patients with behavioral health conditions, English and Spanish-speaking, were recruited. On average, participants recognized 82.7% of the 30 items from their own EHRs. Participants considered mental health (76.0%), sexual and reproductive health (75.0%) and alcohol use and alcoholism (50.0%) sensitive information. Participants were willing to share information related to other addictions (100.0%), genetic data (95.8%) and general physical health information (90.5%). CONCLUSION: The findings indicate diversity in patient views on EHR sensitivity and data sharing preferences and the need for more granular and patient-centered electronic consent mechanisms to accommodate patient needs. More research is needed to validate the generalizability of the proposed methodology.

Perceptions and Preferences About Granular Data Sharing and Privacy of Behavioral Health Patients.

Little is known about data sharing preferences for care and research of behavioral health patients. Eighty-six behavioral health patients (n = 37 Latinos; n = 32 with serious mental illness) completed questionnaires, in either English or Spanish, with items assessing their views on privacy and sensitivity of health record information. Most patients (82.5%) considered mental health information as sensitive. In general, there was a direct correspondence between perceived sensitivity of information and willingness to share with all or some providers. A main motivation for sharing data with providers was improving the patient's own care (77.8%). Most participants (96.5%) indicated they would be extremely to somewhat willing to share their data for research with their care facilities and universities. Follow-up patient interviews are being conducted to further elucidate these findings.

Design and Pilot Testing of an English and Spanish Behavioral Health Patient Survey on Data Privacy.

We piloted a Spanish and English survey on data privacy. Thirty-one Latino behavioral health patients completed the survey in person with a preference for paper (78%) over electronic questionnaire. Dialect variations across Latino countries and the lack of tools to assess reading level in Spanish affected comprehension. Our experience will help others address similar tasks more effectively and encourage inclusion of Latino populations in future research.

Current State of Electronic Consent Processes in Behavioral Health: Outcomes from an Observational Study.

An integral element of value-based care is care team access to both physical and behavioral health data. Data release processes in both environments are governed by federal and state statutes. The requirements for obtaining consent are complex and often confusing. Little is known about the consent processes and practices in the behavioral health setting, specifically how patients and surrogates engage in the process and their interactions with electronic consent tools. This study analyzes the consent processes from the patient perspective at two community behavioral health clinics. Outcomes include description of the processes using electronic consent, workflows and consenter-provider interactions. Conclusions include need to streamline and standardize consent technologies and improve consenter engagement. This study supports the development of an electronic consent tool, My Data Choices (MDC), funded by the National Institute of Mental Health, that offers individuals with behavioral health conditions more control over their medical records.