Journal article

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

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

Journal of Medical Internet Research | JMIR PUBLICATIONS, INC | Published : 2016

Abstract

BACKGROUND: Electronic health records are widely acknowledged to provide an important opportunity to anonymize patient-level health care data and collate across populations to support research. Nonetheless, in the wake of public and policy concerns about security and inappropriate use of data, conventional approaches toward data governance may no longer be sufficient to respect and protect individual privacy. One proposed solution to improve transparency and public trust is known as Dynamic Consent, which uses information technology to facilitate a more explicit and accessible opportunity to opt out. In this case, patients can tailor preferences about whom they share their data with and can ..

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University of Melbourne Researchers

Grants

Awarded by Wellcome Trust


Awarded by Medical Research Council (MRC) Clinician Scientist Fellowship


Awarded by Economic and Social Research Council


Awarded by Engineering and Physical Sciences Research Council


Awarded by Medical Research Council


Funding Acknowledgements

KS was supported by a research-funding award from Arthritis Research UK. JK was supported by a Wellcome Trust grant (096599/2/11/Z). WGD was supported by a Medical Research Council (MRC) Clinician Scientist Fellowship (G0902272). Background work was partially supported by the Technology Strategy Board, the Engineering and Physical Sciences Research Council, and the Economic and Social Research Council (grant number EP/G002541/1) for JK, DL, and EAW.