I’m beyond thrilled. Way beyond thrilled. This is going to take some figuring out, but is this what we’ve been striving toward, or what??

For years we’ve written here about the OpenNotes study (MyOpenNotes.org), funded by the Robert Wood Johnson Foundation, which established that when patients can read their doctors’ unedited visit notes – the hairy detailed medicalese – the world does not fall apart, the sky does not fall; to the contrary, things overall work better and patients like it so much that 85% said from now on access to their notes would be a factor in their choice of provider!  (For full study results see here.)

Today over five million patients have access to their notes, at such world-class institutions as M.D. Anderson, Geisinger, Kaiser Permanente, and many more. (See the list here.)

Well, yesterday a big next step was announced: a grant from the Commonwealth Fund to develop OurNotes, in which patients will get to contribute to what’s in the record!

This initial study is for the most costly / complicated patients – people with multiple chronic conditions – but I’ll bet all the learning will be useful.

I’ll just quote these excerpts from the press release – you can go read the whole thing if you want: (emphasis added)

“We know that increasing patient engagement is a critical component of improving health care, and we hope to build on BIDMC’s well-established work in this area,” said Anne-Marie Audet, MD, Vice President at The Commonwealth Fund. “This research will explore the potential for OurNotes to help improve care among the most medically complex patients – those with multiple chronic health conditions.“

and

“We envision the potential capability of OurNotes to range from allowing patients to, for example, add a list of topics or questions they’d like to cover during an upcoming visit, creating efficiency in that visit, to inviting [the] patient to review and sign off on notes after a visit as way to ensure that patients and clinicians are on the same page,” said principal investigator, Jan Walker, RN, MBA, Division of General Medicine and Primary Care at BIDMC and Assistant Professor of Medicine at Harvard Medical School.

This project will incorporate the original OpenNotes study sites plus two new ones:

The Commonwealth Fund grant will support work at five sites, including original OpenNotes study partners, BIDMC, Geisinger Health System in Danville, PA and Harborview Medical Center in Seattle, WA, and more recent OpenNotes adopters, Group Health Cooperative, also in Seattle and Mosaic Life Care in St. Joseph, MO.

Two related items show how timely this is:

When you’re onto something real and things pan out, related items start to pop up like seedlings. From just the past two days:

• Patient and Family Access to Electronic Health Records: A Key Ingredient for a Pediatric Learning Health System – a new commentary in our Journal of Participatory Medicine
• When Patients Read What Their Doctors Write: How accuracy, understanding, and even health outcomes can dramatically improve when patients simply view their medical records – a new article in the February Reader’s Digest by Leana Wen MD (@DrLeanaWen), the new Baltimore City Health Commissioner (@BMore_Healthy). She’s been on NPR a lot, and last fall recorded a great TED Talk (about physician disclosures – and her own mother’s story).

Let’s do this thing! Get involved in participatory medicine – if you’re a clinician, talk it up at your insitution, and if you’re a patient, ask for access to your notes (show them the OpenNotes site) and start people thinking about making it OurNotes.

See, I learned in policy meetings in DC: so often a resisting hospital will say “Well, our patients don’t ask for this stuff.” So do it.

Addition 30 minutes later:

See Commonhealth’s interview today with project leader Jan Walker on WBUR: How Are We Today? Study Lets Patients Help Write Medical Notes, “Google Doc” Style