• Patients do keep their own medical records
• They want access to everything in their record
• Privacy worries “appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers”
• “health professionals professed far more concern about maintaining privacy than patients.”
• They understand that their clinicians are busy/stressed, they want the information to supplement and make their (clinicians) work more efficient, not less

Boy do I wish we’d all known about this during the debates about meaningful use and medical records this summer! There was so much talk about “Well what do people want?” and “Won’t patients be overwhelmed? They won’t be able to understand it.”

And here’s the thing: it was published back in May, and the research was done THREE YEARS AGO, Nov. 2006 to Jan. 2007.

How’s that for a great example of the “lethal lag time” we talk about in the e-patient white paper?  That’s the delay between when new knowledge comes into existence and when it’s made its way through the publication system, for use by decision-makers. Three years, in this case.

Thanks to the always magnificent, e-patient-minded Ted Eytan, MD for highlighting this study on his blog Friday.

Ted Eytan MD took the picture and posted it on Flickr. Today he sent this email to Reggie:

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Dear Regina,

You made it, scroll about 3 pages down:

http://www.bmj.com/cgi/section_pdf/339/sep09_3/b3681.pdf

People spend entire careers hoping to change practice by getting published in the BMJ (one of the most prestigious medical journals in the world, if not the most prestigious), and you did it in 2 months through the experience reflected in your art. Incidentally, the publisher had no idea who I was or what I do when they found the photos I took on Flickr, so this was all you. What does that say about the power of the patient voice!

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And what does it say about the power of Regina’s painting to communicate?

While we’re at it, I ask that you read the caption: “Fred Holliday died from kidney cancer aged 39 the day the Senate took up health care reform. Without health insurance he couldn’t afford the tests to investigate the cause of night sweats, fatigue, and bloody urine.”