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Perceptions and Preferences About Granular Data Sharing and Privacy of Behavioral Health Patients
Hiral Soni, Adela Grando, Marcela P. Aliste, Anita Murcko, Michael Todd, Madhumita Mukundan, Michael Saks, Caroline Horrow, Richard Sharp, Christy Dye, Darwyn Chern, Mary Jo Whitfield, Mark Callesen
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.
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