In writing about OpenNotes last summer, I argued that the practice of sharing clinicians’ notes with patients had moved beyond the question of whether it was a good idea (the landmark study published in Annals of Internal Medicine was pretty clear on that) to questions of how best to implement it.
As more organizations adopt the practice, it’s clear that we’re now in a phase of implementation, and experimentation with different approaches and learning. Tom Delbanco, MD, one of the project leads, often compares open notes to a drug — it does have some side effects and some contraindications for some people and some circumstances — and we all need to understand those nuances.
To make it easier for health care organizations to offer the service to their patients, the OpenNotes project team has just released a new toolkit.
The toolkit focuses on two challenges: helping organizations make the decision to implement open notes and helping organizations with all the steps involved in implementing open notes.
It includes a slide deck that lays out the results of the study and makes the case for implementation, a video profile of how a patient and her doctor have used the practice, profiles of the implementations at the pioneering sites, FAQs for clinicians and patients, and tips for clinicians on how to write open notes.
Please check it out and tell the OpenNotes team what you think: is it valuable? How could it be better?
A few years ago, Tom Delbanco and Jan Walker pitched us with a simple idea: Patients should routinely be able to see the notes that physicians write about them. Now it’s true that we all have the legal right to see these notes, but obtaining them is anything but routine. The process involves phone calls, faxes (sic), duplicating fees and all sorts of other demoralizing steps. The net result is that reviewing your doctor’s notes about you is a rare experience.
Tom and Jan said that the physicians with whom they had spoken about this idea were split. Some were interested, some were resigned: They recognized that transparency was an increasingly powerful wave and that the world seemed to be heading this way, and the others thought they were crazy―notes were for documentation and communication among doctors and were never intended for patients. The arguments were of a religious quality―they were about belief and values. The obvious solution was to test the idea and let data help sort it out. Today, with the publication of the study results in the Annals of Internal Medicine, that debate is now illuminated.
One hundred and five primary care doctors, more than 19,000 patients and 12-months of testing at three sites has brought us to some striking findings: Patients overwhelmingly support open notes; they report significant benefits from it; and doctors reported that the effects on their practice have been minor. I encourage you to read the full paper so you get the full context (and do pay attention to the limitations section). You’ll find a number of interesting results. Here are three that I think are especially worth reflecting upon:
1. 60-78% of patients (depending on the study location) reported that they took their medications better. This is self-reported data, so the numbers might be exaggerated, but this finding, along with other results related to taking better care of oneself and understanding one’s health conditions better, suggests there’s a significant potential for clinical benefit.
Today’s Boston Globe ran a story (page one, no less!) announcing our grant to Beth Israel Deaconess Medical Center to run a three-site demonstration of opening up physicians’ notes to patients. That’s not just making labs, drugs, allergies, etc. available to patients – it’s giving them access to the actual notes that the physician records about a visit. Now these notes are technically available now – under HIPAA each of us has a right to our full medical records (of which physician notes are a part), but the process for obtaining them is often slow, cumbersome and even expensive in some cases. Under this project, called Open Notes, patients will receive a secure email after the note has been completed and they can see it right away. They’ll also be prompted to review the note prior to their next visit. So instead of limiting access to the very determined, access will be easy for anyone who’s mildly interested.
Why would we fund this? Several reasons, really. First, is that at the Pioneer Portfolio, we’re very interested in patient-centered innovation. Let’s face it: virtually every trend suggests that people are going to have to become much more engaged in their care and in taking care of themselves. And, as the pioneers of shared decision-making, patient centeredness, patient activation, online support groups and the health 2.0 community have shown us, real benefits come from this engagement. So much of the energy and excitement in health care today is coming from the patient/consumer side of the equation. So it’s a space where we believe we will find many innovations that can ultimately transform health.Continue reading…
By STEVE DOWNS and JOHN LUMPKIN, SVP, Health Care Group, RWJ Foundation
Dr. Lumpkin serves as director of the Robert Wood Johnson Foundation’s Health Group, where he is responsible for planning and program management. Prior to joining RWJ, Dr. Lumpkin led the Illinois Department of Public Health for 12 years. As assistant vice president, Downs plays a leading role on the Foundation’s Pioneer Portfolio team. During his tenure at the Foundation he has created, developed, or overseen the Foundation’s investments in such key initiatives as Project HealthDesign, InformationLinks, the Health e-Technologies Initiative, the Public Health Informatics Institute, Connecting for Health, and Common Ground. His writings may be found at Pioneering Ideas, where this post first appeared.
Recently, Steve posted about the idea, floated by Ken Mandl and Zak Kohane, that EHRs (or health IT more broadly) could move to a model of competitive, substitutable applications running off a platform that would provide secure medical record storage. In other words, the iPhone app model, but, for example, you could have an e-prescribing app that runs over an EHR instead of the Yelp restaurant review app on your iPhone. We’re thinking about the provider side of the market here, as Google Health and Microsoft HealthVault are already doing this on the consumer side.Continue reading…