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

ABSTRACT

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.