Hear hear! That’s from a new commentary published Monday in Modern Healthcare about the OpenNotes project, in which patients have full access to their doctor’s visit notes. We’ve written about it numerous times, dating back to our June 2010 “OpenNotes” project begins: what happens when patients can see the physician’s visit notes? (Check out the Seinfeld clip on that post, in which Elaine tries to read her chart and gets marked “difficult” by the doctor!)

OpenNotes is funded by Robert Wood Johnson Foundation’s Pioneer Portfolio, which likes to study the frontiers, the real leading edge of medicine, to anticipate the future. It was a Pioneer Portfolio grant that funded our e-Patient White Paper, and OpenNotes seems a natural cousin, as it explores what happens when patients become more engaged as partners in care.

The full results of the study haven’t been published yet, but the principal investigators are starting to speak. In the Modern Healthcare commentary, principal investigators Dr. Tom Delbanco and Jan Walker, RN, MBA say: (Emphasis added)

We urge the government, other payers, clinicians and consumers to move even further forward. If consumers are to become truly active partners in their own healthcare, they should be able to retrieve their personal medical information readily, including their doctors’ notes. As doctors and hospitals increasingly use information technologies to embrace transparency and information-sharing, let’s move toward “open notes” and adopt them proactively and eagerly, rather than with mumbling and grumbling.

They continue:

As a primary-care doctor with 40 years of experience with patients, teaching and studying health services, and as a nurse who promotes the use of information technology to improve care, we understand that engaging patients actively in promoting health and managing illness is a long-standing but elusive goal of healthcare. We also believe that giving patients access to their own medical notes may help them manage their care more effectively and join in efforts to detect and prevent medical errors.

Importantly, OpenNotes was designed to include an urban academic setting (Beth Israel Deaconess in Boston), a rural setting (Geisinger in Pennsylvania), and a safety net population (Harborview, Seattle). This will allow detecting which outcomes and attitudes are the same across settings and which ones vary.

A hint of great news to come, for lovers of participatory medicine:

We are learning that patients are overwhelmingly interested in gaining rapid access to their notes and that many doctors appreciate the potential for open records to improve care. … The enthusiasm of patients appears to cut across all lines of age, health status and education. And while many doctors turned down our invitation to join the one-year project, citing fears that their notes would adversely affect their already onerous work flow and frighten or confuse patients, only one doctor who signed up for the study later dropped out, and that was for personal reasons. … Moreover, hallway conversations indicate that doctors have not experienced significant disruptions to their work…

That’s all I can quote here, due to copyright regulations. But clearly the authors are excited, and so am I. As my own physician Dr. Danny Sands has said, “How can patients participate if they can’t see what I see?”

Can’t wait to see the detailed results, as they unfold in journal articles yet to come.

(btw, the full article is behind a paywall, dagnabbit! Isn’t this supposed to be about patients seeing what the doctors see?? Last year’s article in the Annals of Internal Medicine was open access – can Modern Healthcare please do the same?)

Checklists in hospitals can dramatically reduce infections; checklists in the operating room can prevent all kinds of simple human errors even among brilliant conscientious people. There’s evidence for that.

Non-Twitter people, ignore the Twitter shorthand – this is just a quick way for me to capture the public discussion:

Me: RT @LeanBlog @flinchbaugh: A good read…What Sort of Checklist Should You Be Using? – Justin Fox – HBR http://ow.ly/1nhB2

@Lygeia: What would a checklist specifically for patients look like?

Me: Did you see Peter Pronovost in NYTimes last week on that? Do you know @TrishaTorrey’s “You Bet Your Life” book?

@Lygeia: “You Bet Your Life” by @TrishaTorrey looks closest–I just bought it–thanks!

@PNSchmidt (a Parkinson’s Disease specialist): My org and PDSociety UK have checklists for patients: http://bit.ly/9NCsoq http://bit.ly/cYGBoR

Robert Wood Johnson Foundation’s Pioneer Portfolio likes the discussion:
@PioneerRWJF: RT @ePatientDave: Great question! Let’s discuss RT @Lygeia: @ePatientDave What would a checklist specifically for patients look like?

A new voice (new to me), INQRI, pops up (“The Interdisciplinary Nursing Quality Research Initiative does research to understand how nurses contribute to and can improve the quality of patient care.”:
@INQRIProgram: patient checklist might include: have list of current meds, tell every1 to wash hands, ask questions

@Lygeia: Thanks @pnschmidt I especially like patient checklist at http://bit.ly/cYGBoR

@Lygeia: A streamlined, smartphone-based patient checklist would be cool INQRIProgram @pioneerrwjf, @ePatientDave

@INQRIProgram: you may be interested in some work we’ve done involving patients’ contributions to quality. http://bit.ly/92Ktgi

What do you think?

Yesterday the Institute for Healthcare Improvement’s “WIHI” series hosted a terrific webcast on the Open Notes project that’s being funded by the Robert Wood Johnson Foundation. (I need to dig up the link to the event’s archive, but I’m in a hurry.)

Speakers were Dr. Tom Delbanco of Beth Israel Deaconess Medical Center (a pioneer of patient access), Dr. Mary Merkel of Dartmouth-Hitchcock, and Bob Desaulniers, a patient of Dr. Merkel’s who lives in my own town, Nashua NH. Gotta go meet them!

Inevitably we revisited the hoary concerns about the horrible things that will happen if we see our health data. Dr. Delbanco cited a paper from the 1970s that advocated giving patients their medical records. And this morning Ted Eytan dug it out.

In this era of evidence-based medicine, isn’t it time for policy makers to look at this evidence?

Ted’s post:
________________________________________
McLaren P. The right to know. [Internet]. BMJ 1991;303(6808):937-938.

I’m not that smart and my ideas are not that unique.

This is why I enjoy writing the posts that are tagged “where we came from” on this blog.

The title of this one comes from a 1991 article published in the British Medical Journal about the idea of providing patients access to their complete medical record. To really dig deep, though, I wanted to grab the seminal 1973 article from The New England Journal of Medicine on this topic, and thanks to the Internet, I found it.

In Sounding board. Giving the patient his medical record: a proposal to improve the system (There appears to be a PDF of this article on the Internet here), authors Shenkin and Warner lay out some facts about the health system that don’t seem to different than those of today, sadly:

Dissatisfaction with the functioning of the medical care-system has become widespread. Four serious problems are maintaining high quality of care, establishing mutually satisfactory physician-patient relations, ensuring continuity and avoiding excessive bureaucracy.

Some differences were apparent in 1973, such as the fact that in 41 states, patients could only obtain their medical records through litigation (!). Also, it appears with the emergence of “centralized organization” though things like health maintenance organizations, that physician autonomy was under siege. The health system was considered at the time to be “decentralized to the penultimate step – the physician” and the fear was that their autonomy was “unchecked.”

All of that aside, the authors, quite visionary in my opinion, laid out an almost Web 2.0 version of the medical world.

They talked about the idea of “decentralized medical review.” A few quotes:

The freely available record would provide a more “longitudinal” view of a patient, and physicians would appreciate better (and treat better) the course of a disease. Since innovation proceeds mainly by the contagion effect, new knowledge would probably be put into practice more swiftly.

And this one

Decentralized peer review would provide recognition of excellence in the practice of medicine, and hence enhance the prestige of being a practicing physician. Patient records and the care that they reflected would become a source of pride open to the perusal of fellow professionals. The expected improvement in continuity would decrease frustrations, and improved physician-patient relations would add importantly to physician satisfaction.

Whoa. They are talking wisdom of crowds, viral innovation, and building trust through transparency. In 1973.

Flash forward to 1991. In The Right to Know, author McLaren discusses data from Denmark, which provided patients “statutory rights” to their entire hospital record, with no ill effects. He concludes:

The argument against giving patients greater access to their records has been lost; the challenge now is to get doctors skilled in writing records that their patients will find useful.

Whoa. He’s talking Meaningful Use.

1973 was before my medical time, but 1991 wasn’t. In 1991 I was in medical school, and I’m pretty sure if you asked me, “Ted, should your patients see what you wrote about them in that manila folder thing with paper?” I would have said, “Why shouldn’t they?”

Ironically, it’s probably the very group that opposed these viewpoints that are responsible for creating mine. Summer of 1991 was my first (and I think just one of 2) trips to the national meeting of the American Medical Association, in Chicago. That meeting was marked by protests from the HIV/AIDS community on the outside. And on the inside, after a week, I remember leaving with the thoughts, “I met a lot of great peers here, but who are these leaders who are resistant to technology and only allow heterosexual men to participate?* They aren’t me. And I’m not them.” This is the heritage of Generation X – we were groomed to be on the side of the patients.

So that’s my story, and the story of where we came from with regard to sharing medical records with patients. Has nothing happened in 18 years? Absolutely not.

• The largest medical groups in the United States regularly share medical records with patients, online
• Most patients have a “statutory right” to their hospital record, albeit, not in the most friendly or useful way (see this example from Tufts University)
• Crowdsourcing, trustbuilding, and transparency are sweeping the business world. Health care is on the verge.
• Generation X are the attending physicians and medical directors, Generation Y are graduating from their residencies.

In the Shenkin article, it was proposed that a law be passed to require that a “complete and unexpurgated copy of all medical records, both inpatient and outpatient, be issued routinely and automatically to patients as soon as the services provided are received.” They do a great job of covering every known objection, “firstly” through “ninthly.”

My favorite is of the fear of “poor quality review” by peers and patients. They said that in 1973, it is “safer for them (physicians) to measure adequacy by academic degrees achieved than by competence demonstrated.”

The great thing I have learned pretty solidly from so many people by 2009 is that the medical community has so much support from patients and families – they want them to be great, they will only help. One patient said this at a recent continuing education course to room of us: “Can I just say thank you for paying attention in medical school, you are in my thoughts, you have my full gratitude.”

Let’s please remember these words to keep the conversation about ending secrecy an easy one, not a hard one. And, carry these two articles in our back pockets at all times.

*The American Medical Association has since reversed its stance on discriminating against gay, lesbian, bisexual and transgender physicians and patients.

It was a provocative talk, because although “everyone knows” the Obama administration has mastered social media, there’s a real question of whether we out here actually use those blogs. And it had never even occurred to me to go there – I have about six zillion other blogs I want to keep up on, and besides, to me social media is all about conversations, not one-way publishing or one-way reading. I commented that the thing about the administration isn’t just that they publish, it’s that they seem to listen.

Anyway, when Aliya published another piece today, Administration urged to engage public on e-health records, I took a look. She spoke with Michael Painter of the Robert Wood Johnson Foundation, and the famous Brian Klepper of Healthcare Performance, inc. And something Brian said stuck in my craw:

In my view, there are parallel universes of health care reform discussion. One is what everyday people are saying and thinking. . . .And, yes, the White House hopes people will visit its site on reform and weigh in. The core problem here is that there is no political power center for regular people to glom on to health care reform.”

(Emphasis added.)

Think about that: the only people who will live or die, depending on how reform goes, have no power center in Washington.

It took me right back to Craig Stoltz’s excellent post last night about the new Declaration of Health Data Rights: Declaration of Health Data Rights: Aux Barricades!

Craig’s point is “The most visible and active ‘stakeholders’ in discussions about HIT so far have been … commercially self-interested players who may not [or, to be fair, may] have patient rights … top-of-mind.”

As I often say, I have nothing against business; I’m in business. But I assert that something is terribly broken if we – the ones who stand to live or die depending on this issue – have no power center to “glom on to.”

Think about it: all we hear about from DC is what the AMA wants, what pharma thinks, and so on. Where the hell is the voice of the patient?