OpenNotes: Great News for Patient Engagement!!

Regular readers know that we’ve long anticipated the result of the OpenNotes project. Our first post about it was in June 2010: OpenNotes project begins: what happens when patients can see the physician’s visit notes? It tied the issue all the way back to the birth of the Web, in 1994:

The opening anecdote of the e-patient white paper 20th page of this PDF; 23rd page in the Spanish edition tells of a patient who impersonated a doctor in 1994, to get his hands on an article about an operation he was about to have. He got busted.

Two years later episode 139 of Seinfeld had something similar. Kramer impersonates a doctor to try to get Elaine’s medical record.

Now, the Robert Wood Johnson Foundation (RWJF) is funding a study called OpenNotes to explore taking it a big step further: what happens if patients can see, online, every last bit of what their doctors wrote?Do doctors get overwhelmed with questions? Do patients freak out when they read the yucky medical words that doctors write? Does the world go to hell in a handbasket, as some have worried aloud?

The results were released yesterday, in a new article in the Annals of Internal Medicine. (See the OpenNotes website.) Co-lead authors Tom Delbanco MD and Jan Walker, RN, MBA shared a pre-release copy with e-patients.net. They describe the study’s intent:

Drawing on existing literature, including small studiesĸof patients with chronic illness, we developed 3 principalĸhypotheses.

  • First, most patients would read the notes, and those who did would report both greater engagement in care and improved management of health and illness.
  • Second, the intervention would have few adverse effects on the doctors? frenetic work lives.
  • Third, at the end of the approximately 1-year intervention, a large percentage of doctors and patients would choose to continue with openĸnotes.

I can’t emphasize enough the importance of the study’s design, as well: Evidence of patient engagement is constantly met with “Well, my patients are different,” “My patients are poorer,” “You guys are all urban geeks,” “Your nis too small,” etc. So this study is large (over a hundred docs and nearly 20,000 patients), and in three very different settings:

  • Urban academic medical center (Beth Israel Deaconess, Harvard-affiliated, Boston – home of SPM co-founder / past President / past co-chair Dr. Danny Sands and me. We were among the guinea pigs, I mean study participants.)
  • Rural: Geisinger, in Pennsylvania
  • “Safety net” (urban poor): Harborview, in Seattle

This issue – patient access to the medical record – is at the core of participatory medicine. As Dr. Sands has said, “How can patients participate if they can’t see what I see?”

We love that the full text of this article is open access – free to the public – andĸand one of the accompanying editorials was written by a patient. Kudos to the Annals!

The results, in brief: (emphasis added)

Patient experience:

  • “Among patients with notes available, 84% at BIDMC, 92% at GHS, and 47% at HMC opened at least 1 note.”
  • “A large majority of patients perceived benefits, and few reported downsides of open notes; however, one third of patients were concerned about privacy.”
  • “Nearly 99% of patient respondents at BIDMC, GHS, and HMC wanted continued access to their visit notes.”
  • “86% at BIDMC, 87% at GHS, and 89% at HMC agreed that open notes would be a somewhat or very important factor in choosing a future doctor or health plan.“(!)

Physician experience:

  • Most docs estimated that conversations with patients about open notes occurred less than once a month
  • “Moreover, 38% at BIDMC, 30% at GHS, and 43% at HMC indicated that they could not estimate the proportion of their patients who read notes because no or very few patients ever mentioned it.”
  • “More than half of patients who received medications reported improved adherence, consistent with findings about general adherence from another open-records study.”
  • At the end, “99% of patients wanted open notes to continue and no doctor elected to stop.”

My thoughts

First, I’m thrilled that the study was so well designed, and so big. When an earnest skeptic expresses concern about something, there’s nothin’ like a big honkin’ n to relieve those concerns. Sure, there will still be skeptics, but now we have data.

Second, this is something we e-patients – and potential e-patients – can take to the doctor and say “Please: get that patient portal thingie for your new EMR, and even better, let us see your actual notes! See here? It won’t kill you – might even make us do our part better!”

(During the study I posted about two personal experiences: an open note helped me remember to do something, and my thoughts on a specialist visit that was not enabled by open notes, and clearly limited my care.)

And finally (for now), many American hospital executives are greatly concerned about the new era of “accountable care,” in which their reimbursement will increasingly depend on how well patients do, and that of course is affected by how much patients do. From the looks of things, this study – and my personal experience in it – strongly support the idea that best patient performance is supported by bringing the patient in – letting us see the medical record.

The evidence says it doesn’t ruin the doc’s life. In fact, it’ll be a business advantage: most patients said it’ll be a factor in which providers they’ll choose! That’s how much patients want it.

I never met our founder “Doc Tom” Ferguson, but I imagine he’d be thrilled by this evidence. Give us our data – please. Let Patients Help!

Dave deBronkart better known as “e-Patient Dave,” is one of the leading spokesperson for the e-Patient movement. A high tech executive and online community leader for many years, he was diagnosed in 2007 with Stage IV kidney cancer, with a median survival of just 24 weeks. He used the internet in every way possible to partner with his care team and beat this unbeatable disease. Today he is well. In 2008 he discovered the e-patient movement, and began studying, blogging, and speaking at conferences, and in 2009 was elected founding co-chair of the new Society for Participatory Medicine. In 2010 he released his first book: “Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it).” He blogs frequently at e-patients.net.

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