Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Sep 23, 2019
Open Peer Review Period: Sep 23, 2019 - Nov 8, 2019
Date Accepted: Nov 25, 2019
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Open access as revolution: knowledge alters power
ABSTRACT
The slogan "Gimme My DaM Data" has become a hallmark of the patient movement to gain access to data in their medical records. Its first conference appearance was ten years ago, in September 2009. In the decade since, enormous environmental changes have arrived, in both the technology and the sociology of medicine, and in their synthesis. As the patient movement has made strides it has met opposition and obstacles, and it has become clear that the availability of Open Access is just as empowering - or disabling - as access to EMR data and device data. Knowledge truly is power, and to withhold knowledge is to disempower. This essay lays out many - but far from all - examples of how this shows up as we strive for the best future of care.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.