{"id":15412,"date":"2013-10-14T10:00:00","date_gmt":"2013-10-14T14:00:00","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=15412"},"modified":"2013-10-11T09:51:10","modified_gmt":"2013-10-11T13:51:10","slug":"rainbow-button-2013-edition","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2013\/10\/rainbow-button-2013-edition.html","title":{"rendered":"Rainbow Button – 2013 Edition"},"content":{"rendered":"

\"rainbow-circle-button-hi\"Meaningful Use Stage 2 includes the requirement that health care providers with EHRs seeking Meaningful Use incentive dollars demonstrate that 5% of patients actually view, download or transmit their data.<\/p>\n

The HIPAA\/HITECH Omnibus Rule, which is now fully in effect (though the enforcers of the rules are \u201cnonessential\u201d and not on the job during the current government shutdown), empowers patients to request their health care providers to deliver their records electronically in a format of the patient\u2019s choosing (so long as that is reasonably doable by the provider).<\/p>\n

Taken together, these two regulatory levers hold promise for better patient access to records, and to the usability of those records for individual patient care and for broader research purposes, too.<\/p>\n

As we lumber down this road, I would like to bring to your attention a presentation I gave a couple weeks ago at the StrataRx Big Data in Healthcare conference, promoting the idea of the \u201crainbow button.\u201d Here are a couple of links: my rainbow button presentation and livetweets<\/a>; some follow-up press coverage on CIO.com<\/a> that captures some of what I said.<\/p>\n

The central idea I presented is that instead of analyzing de-identified PHI in order to answer research questions and\/or improve health care (which is what happens now when research is done with data from EHRs), we could be analyzing patient-donated data, provided without de-identification if that\u2019s what patients want (and many do, e.g., folks with rare diseases who want to help). That\u2019s what we mean by \u201cgreen button<\/a>\u201d \u2013 hat tip to Mark Scrimshire<\/a> and Susannah Fox<\/a> \u2013 a riff on the \u201cblue button\u201d of health record downloads first enabled on the VA EHR system) or with some patient-selected restrictions (hence the term \u201crainbow button\u201d).<\/p>\n

Bypassing the whole HIPAA regulatory superstructure makes data sharing easier in the long run. While this approach requires individual patients to opt in (making it harder in the short run — unless health information exchanges or their health care provider or payor users make it painless for patients to opt in to sharing), it could be made easier by a data aggregator that logs and respects patient wishes regarding sharing.<\/p>\n

Here\u2019s what could be gained (for example; please chime in with other thoughts on what may be gained):<\/p>\n