Sharing De-identified Medical Images Electronically for Research: A Survey of Patients' Opinion regarding Data Management

Canadian Association of Radiologists Journal - Tập 70 - Trang 212-218 - 2019
Rasha Mahmoud1, Alan R. Moody1,2, Moran Foster1, Natasha Girdharry1, Loreta Sinn1, Bowen Zhang1, Mariam Afshin1, Thayalasuthan Vivekanandan1, Samantha Santoro2, Pascal N. Tyrrell2,3
1Department of Physical Sciences, Sunnybrook Health Sciences Centre, Toronto, ON, Canada
2Department of Medical Imaging, University of Toronto, Toronto, ON, Canada
3Department of Statistical Sciences, University of Toronto, Toronto, ON, Canada

Tóm tắt

Purpose Secondary usage of patient data has recently become of increasing interest for the development and application of computer analytic techniques. Strict oversight of these data is required and the individual patients themselves are integral to providing guidance. We sought to understand patients' attitudes to sharing their imaging data for research purposes. These images could provide a great wealth of information for researchers. Methods Patients from the Greater Toronto Area attending Sunnybrook Health Sciences Centre for imaging (magnetic resonance imagining, computed tomography, or ultrasound) examination areas were invited to participate in an electronic survey. Results Of the 1083 patients who were approached (computed tomography 609, ultrasound 314, and magnetic resonance imaging 160), 798 (74%) agreed to take the survey. Overall median age was 60 (interquartile range = 18, Q1 = 52, Q3 = 70), 52% were women, 42% had a university degree, and 7% had no high school diploma. In terms of willingness to share de-identified medical images for research, 76% were willing (agreed and strongly agreed), while 7% refused. Most participants gave their family physicians (73%) and other physicians (57%) unconditional data access. Participants chose hospitals/research institutions to regulate electronic images databases (70%), 89% wanted safeguards against unauthorized access to their data, and over 70% wanted control over who will be permitted, for how long, and the ability to revoke that permission. Conclusions Our study found that people are willing to share their clinically acquired de-identified medical images for research studies provided that they have control over permissions and duration of access.

Tài liệu tham khảo

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Thông tin xuất bản

Canadian Association of Radiologists Journal

Tập 70

212-218

Thông tin tác giả