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

doi:10.3233/SHTI190449

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 proceeding › Conference contribution

11 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 language	English (US)
Title of host publication	MEDINFO 2019
Subtitle of host publication	Health and Wellbeing e-Networks for All - Proceedings of the 17th World Congress on Medical and Health Informatics
Editors	Brigitte Seroussi, Lucila Ohno-Machado, Lucila Ohno-Machado, Brigitte Seroussi
Publisher	IOS Press
Pages	1361-1365
Number of pages	5
ISBN (Electronic)	9781643680026
DOIs	https://doi.org/10.3233/SHTI190449
State	Published - Aug 21 2019
Event	17th World Congress on Medical and Health Informatics, MEDINFO 2019 - Lyon, France Duration: Aug 25 2019 → Aug 30 2019

Publication series

Name	Studies in Health Technology and Informatics
Volume	264
ISSN (Print)	0926-9630
ISSN (Electronic)	1879-8365

Conference

Conference	17th World Congress on Medical and Health Informatics, MEDINFO 2019
Country/Territory	France
City	Lyon
Period	8/25/19 → 8/30/19

Keywords

Electronic Health Records
Privacy
Surveys

ASJC Scopus subject areas

Biomedical Engineering
Health Informatics
Health Information Management

Access to Document

10.3233/SHTI190449

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

Perceptions and preferences about granular data sharing and privacy of behavioral health patients. / Soni, Hiral; Aliste, Marcela P.; Murcko, Anita et al.
MEDINFO 2019: Health and Wellbeing e-Networks for All - Proceedings of the 17th World Congress on Medical and Health Informatics. ed. / Brigitte Seroussi; Lucila Ohno-Machado; Lucila Ohno-Machado; Brigitte Seroussi. IOS Press, 2019. p. 1361-1365 (Studies in Health Technology and Informatics; Vol. 264).

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution

Soni, H, Aliste, MP, Murcko, A , Todd, M, Mukundan, M, Saks, M, Horrow, C, Sharp, R, Dye, C, Chern, D, Whitfield, MJ, 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. Studies in Health Technology and Informatics, vol. 264, IOS Press, pp. 1361-1365, 17th World Congress on Medical and Health Informatics, MEDINFO 2019, Lyon, France, 8/25/19. https://doi.org/10.3233/SHTI190449

Soni H, Aliste MP, Murcko A , Todd M, Mukundan M, Saks M et al. Perceptions and preferences about granular data sharing and privacy of behavioral health patients. In Seroussi B, Ohno-Machado L, Ohno-Machado L, Seroussi B, editors, MEDINFO 2019: Health and Wellbeing e-Networks for All - Proceedings of the 17th World Congress on Medical and Health Informatics. IOS Press. 2019. p. 1361-1365. (Studies in Health Technology and Informatics). doi: 10.3233/SHTI190449

Soni, Hiral ; Aliste, Marcela P. ; Murcko, Anita et al. / Perceptions and preferences about granular data sharing and privacy of behavioral health patients. MEDINFO 2019: Health and Wellbeing e-Networks for All - Proceedings of the 17th World Congress on Medical and Health Informatics. editor / Brigitte Seroussi ; Lucila Ohno-Machado ; Lucila Ohno-Machado ; Brigitte Seroussi. IOS Press, 2019. pp. 1361-1365 (Studies in Health Technology and Informatics).

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

Abstract

Publication series

Conference

Keywords

ASJC Scopus subject areas

Access to Document

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