OpenNotes: The results are in. 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: (Click to watch it on YouTube; they won’t allow embedding on other sites.)

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 ucky medical words that doctors write? Does the world go to hell in a handbasket, as some have worried aloud?

The results were released at 5:00 p.m. ET today, 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 They describe the study’s intent:

Drawing on existing literature, including small studies of patients with chronic illness, we developed 3 principal hypotheses.

  • 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 open notes.

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 n is 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 – and and 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!



Posted in: e-pts resources | general | medical records | PM Tech | policy issues | positive patterns | pt/doc co-care | reforming hc




17 Responses to “OpenNotes: The results are in. GREAT news for patient engagement.”

  1. So . . . unfounded fear prevented us from moving forward on ‘Open Notes”? Thank you and S4PM for prompting and reporting on the release of this important study. I look forward to selecting medical practitioners that provide me the opportunity to participate!

    • Joleen, I wouldn’t jump to conclude that the fears were “unfounded” – in my experience (not just in medicine) most such things are born of true anecdotes, which give rise to beliefs. That’s when it’s time to develop a hypothesis and design a study to test it …

      As YOU know (better than most), it took a long time for medicine to shift from “expert-based” to “evidence-based,” and even that process can be shaky. That’s why I’m (personally) so thrilled about the robust design of this study and its large scale.

  2. Bart Windrum says:

    The thought occurs to me that an open notes environment can be passive or active. I, for one, would prefer a push (towards me, as the patient and/or proxy) environment. At the least, once an office/clinic/facility goes ON there ought to be at the least a checkbox (offer ’em to me, or I’ll ask when I want ’em), or at the most a default offering (on every visit/consult).

    • Bart, my impression is that the new “Automate Blue Button” project will pretty much be “push,” at least as far as it goes: you’ll basically be able to “subscribe to your record,” and automatically get updated when things are added to it.

      And boy, if THAT’s the case, I’m darn glad the evidence says it’s not likely clinicians will get flooded with calls, because if the evidence said otherwise it would be tough.

  3. Jamie Inman says:

    This line stood out to me; “… their REIMBURSEMENT will increasingly depend on how well patients do, and that of course depends partly on how much patients do.”
    If it hits them in their bottom line they will ‘trust’ us. Well, our pockets are empty by a broken system, so whatever it takes to fix it is ok by me!

  4. I’ll be passing this on to my employer groups. This is step one, step for the patients. We have just got to stop being the passive participant in our own healthcare. We wouldn’t be so casual with the car mechanic or plumber would we?

  5. Thrilled to see that our organization, Society for Participatory Medicine, is seeing the tangible results of our labors and those of our many supporters. With the greater understanding of the value of engaging the patient in his/her health care,not only will the patient benefit, so will the general health system. One could also hope that with a more engaged and educated patient population, the near-future costs of healthcare will diminish.

  6. Marilyn Mann says:

    So great that a patient wrote one of the editorials!

  7. Denizen Kocak says:

    To me, this seems like the next logical step in the world of healthcare. Patients are already accessing electronically transmitted information about their health and illnesses from outside sources like WebMD and MayoClinic, so it makes sense that they should be able to do so with their own health records.

    The infrastructure is already in place, or at least is very nearly in place, for this to happen. Most hospitals keep electronic records accessible by smartphone or iPad, and doctors already look at patient information from home. If a secure system can be created, anyone with internet access should be able to see their medical record.

    I believe this would help to bridge the gap between patient and doctor understandings of the condition being treated. Charon et. al. described how patients and doctors tend to view the conditions from different perspectives. The patient looks at how the disease affects their life and how they feel, while the doctor tends to look for a physiological cause and solution to a known and treatable medical condition. By reading what the doctor wrote, the patient should be able to better understand why the doctor recommends a specific treatment, and the thought process behind it.

    When first hearing about this I was concerned about two things: the fact that all data must be recorded electronically under this system, and the fact that the workload of doctors would increase dramatically. I am glad to see that the latter is not an issue, but I still worry about the former. Patel conducted a study that found that different information gets recorded when doctors use pen and paper versus when they use electronic medical records. They found that pen and paper led to a chronological look at the disease and that electronic records led to a loss of data that wasn’t specifically mentioned in the template for recording information. Forcing doctors to use electronic records might be detrimental in the long run unless the template for recording it is improved.

    All in all, I think that this is a step forward for the interested patient, and should be an option for every patient. I am excited to see it put into practice and hope that I will be able to take advantage of it in the near future.

    Link to articles:

  8. Sue Woods says:

    Making History. We can only go forward now.

    More Posts —
    RWJF’s Steve Downs on The Health Care Blog: Open Notes Results Are In.

    Ted Eytan: Open Notes results are in…

    Shared Health Data: Doctors on Open Notes: it was easier than expected.

  9. Wendy Hoechstetter, CAPS says:

    This is fantastic news, Dave!

    Denizen, a couple of my own docs are using electronic records, and the experience of them going back and forth between talking to me and talking into their mics has been strange… Hearing how much they miss or get wrong when I’ve just told them moments before is unnerving, because it made me start to wonder how many other errors might be in records that I’ve mpnever had access to. When they dictate in front of me, I realized that it enables me to be sure the record is accurate!

    I do agree it’s essential to ensure that the template is adequate, but medicine and people being what they are, it’s unlikely that all possible eventualities could be included. It does absolutely need to allow plenty of space for free notes.

    Wendy (former paramedic)

  10. […] the past year I’ve often mentioned the OpenNotes study. Results are in! This is copied from my post last night on […]

  11. Felix Yang says:

    In my view, the results of the “Open Notes” project indicate the rise of the empowered consumer in medicine. I find it amazing that 99% of the 20,000 patients involved in “Open Notes” wanted it to continue and saw this result as a reflection of the increasing interest that patients have in their own healthcare. Perhaps even more astonishing, at least to me, was the fact that doctors were hardly bothered by their patients about their visit notes. As I read through the beginning of the article, I assumed that access to these physician notes would only lead to further irrelevant and even bothersome questions by the typical hypochondriac patient, thus increasing burden on doctors themselves. However, as e-Patient Dave’s anecdote shows, open notes might actually have the potential boost patient compliancy and perhaps even prevent continued visits to the clinic. I believe that open access to the physician notes would be the first of many small steps towards, as Eric Topol puts it in his book The Creative Destruction of Medicine, the “digital revolution of medicine.”

    While hospitals and doctors are progressing towards more electronic methods of data keeping and treatment, patients are becoming more engaged in their own healthcare management by using various social media websites like Facebook and Patients Like Me or through monitoring their own bodies with apps on their iPads and iPhones. The implementation of open online physician notes for patient access would be beneficial for not only the e-Patient, but for everyone involved in the healthcare system. Greater transparency in medical practice would ensure greater accountability on the doctor’s behalf while access to open notes further empowers the patient whether they decide to use it or not. However, I also believe that there are some caveats to the open note system. This open note system is exclusively limited to the internet and, as Denizen mentioned in the above post about Patel, the formatting presented by electronic medical records resulted in a loss of information between physicians and patients resulting in information that “may be hard to reconstruct in terms of meaning and connecting information.” (Patel 15)

    I do believe that open access to physician notes and other digital applications in medicine will lead to an overall better quality of healthcare for patients. As someone who was once completely ignorant of the process of my clinical treatment, I am now extremely excited by all the different ways I can monitor and inform myself about my health through advances in technology. However, I also believe that the “healing touch” of doctors and the human component of the patient-doctor relationship cannot be replicated or replaced by technology. In the future, this is something not only e-Patients should consider but all patients should bear in mind as medicine progresses towards its digital revolution.

  12. […] this month’s Annals of Internal Medicine article and the Geek Doctor’s and the Society for Participatory Medicine’s blog posts. Potentially, access to our professional teams’ notes could help engage and […]

  13. […] touted here the news from the OpenNotes study. If you’re new to it,here’s our post announcing the results last fall,and here’s the project’s website. The results were big news for participatory […]

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