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Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study

Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study

Implementing such a system for this purpose, however, faces some unknowns. While previous surveys have suggested that patients are willing to share their EPR for research [11], would they wish to express consent preferences using a digital system? Would patients value feedback information about who the recipients are and the results of the research via such a system? There is also a need to address the feasibility and barriers for using such a system, and how it could best be implemented.

Karen Spencer, Caroline Sanders, Edgar A Whitley, David Lund, Jane Kaye, William Gregory Dixon

J Med Internet Res 2016;18(4):e66

Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research

Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research

Examples of positive benefit range from how, in the 1940s and 50s, national statistics played a major part in identifying the rising incidence of lung cancer mortality and discovery of its link with smoking, more recently, disproving a suggested link between the measles, mumps, and rubella vaccine and autism [2].

Hawys Williams, Karen Spencer, Caroline Sanders, David Lund, Edgar A Whitley, Jane Kaye, William G Dixon

JMIR Med Inform 2015;3(1):e3