Consent for use of personal information for health research: Do people with potentially stigmatizing health conditions and the general public differ in their opinions?
Donald J. Willison, Valerie Steeves, Cathy Charles, Lisa Schwartz, Jennifer Ranford, Gina Agarwal, Ji Cheng & Lehana Thabane
BMC Medical Ethics 10 (1):10- (2009)
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Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers’ views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers’ willingness to share electronic health information for healthcare and research. (...)