Open access as revolution: knowledge alters power (Preprint)

JOURNAL OF MEDICAL INTERNET RESEARCH(2019)

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摘要
The slogan "Gimme My DaM Data" has become a hallmark of a patient movement whose goal is to gain access to data in their medical records. Its first conference appearance was ten years ago, in September 2009. In the decade since there have been enormous changes in both the technology and sociology of medicine as well as in their synthesis. As the patient movement has made strides, it has been met with opposition and obstacles. It has also become clear that the availability of Open Access information is just as empowering (or disabling) as access to electronic medical records and device data. Knowledge truly is power, and to withhold knowledge is to disempower patients. This essay lays out many examples of how this shows up as we strive for the best future of care.
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关键词
patient engagement,empowerment,patient empowerment,participatory medicine,open access,patient portals,EMRs,EHRs,Patient-clinician relationship
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