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

Stud Health Technol Inform. 2019 Aug 21:264:1361-1365. doi: 10.3233/SHTI190449.

Abstract

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.

Keywords: Electronic Health Records; Privacy; Surveys.

MeSH terms

  • Confidentiality
  • Electronic Health Records
  • Humans
  • Information Dissemination*
  • Privacy*
  • Surveys and Questionnaires