Factors affecting willingness to share electronic health data among California consumers

In BMC Medical Ethics, Katherine Kim and colleagues, including Pamela Sankar, explore factors that affect California consumers’ willingness to share electronic health information for health care and research. The authors conducted a random digit dialed telephone survey of adult Californians in English and Spanish, and assessed 800 consumers’ thoughts on EHR impact on both privacy and research. Consumers’ choices about electronically sharing health information are affected by their attitudes towards EHRs, and their beliefs about research benefit. The odds of consent for electronic data sharing for health care decreased, as ratings for EHR impact on privacy worsened. The odds of consent were greater for those who think EHR will improve research quality, those who value research benefit over privacy, and those who value control over research benefit. In designing interventions utilizing electronic health information, researchers should understand these values of importance to people in order to support learning health care systems.