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

Quantitative Health Sciences

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

3 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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