Perceptions and preferences about granular data sharing and privacy of behavioral health patients

Hiral Soni, Marcela P. Aliste, Anita Murcko, Michael Todd, Madhumita Mukundan, Michael Saks, Caroline Horrow, Richard Sharp, Christy Dye, Darwyn Chern, Mary Jo Whitfield, Mark Callesen, Adela Grando

Research output: Chapter in Book/Report/Conference proceedingConference contribution

2 Scopus citations

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.

Original languageEnglish (US)
Title of host publicationMEDINFO 2019
Subtitle of host publicationHealth and Wellbeing e-Networks for All - Proceedings of the 17th World Congress on Medical and Health Informatics
EditorsBrigitte Seroussi, Lucila Ohno-Machado, Lucila Ohno-Machado, Brigitte Seroussi
PublisherIOS Press
Pages1361-1365
Number of pages5
ISBN (Electronic)9781643680026
DOIs
StatePublished - Aug 21 2019
Event17th World Congress on Medical and Health Informatics, MEDINFO 2019 - Lyon, France
Duration: Aug 25 2019Aug 30 2019

Publication series

NameStudies in Health Technology and Informatics
Volume264
ISSN (Print)0926-9630
ISSN (Electronic)1879-8365

Conference

Conference17th World Congress on Medical and Health Informatics, MEDINFO 2019
CountryFrance
CityLyon
Period8/25/198/30/19

Keywords

  • Electronic Health Records
  • Privacy
  • Surveys

ASJC Scopus subject areas

  • Biomedical Engineering
  • Health Informatics
  • Health Information Management

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  • Cite this

    Soni, H., Aliste, M. P., Murcko, A., Todd, M., Mukundan, M., Saks, M., Horrow, C., Sharp, R., Dye, C., Chern, D., Whitfield, M. J., Callesen, M., & Grando, A. (2019). Perceptions and preferences about granular data sharing and privacy of behavioral health patients. In B. Seroussi, L. Ohno-Machado, L. Ohno-Machado, & B. Seroussi (Eds.), MEDINFO 2019: Health and Wellbeing e-Networks for All - Proceedings of the 17th World Congress on Medical and Health Informatics (pp. 1361-1365). (Studies in Health Technology and Informatics; Vol. 264). IOS Press. https://doi.org/10.3233/SHTI190449