One of the most important culture changes in healthcare this century has been the advent of patients’ access to their physicians’ notes. Called OpenNotes, this project was started at my hospital (Boston’s Beth Israel Deaconess Medical Center) by the extraordinary team of Tom Delbanco MD and Jan Walker RN, MBA. I was lucky enough to be a participant in the first OpenNotes clinical trial in 2010, and enthusiastic enough to blog the daylights out of it since the beginning.
A decade later, on March 9, 2020 OpenNotes became Federal policy in the US, for all practical purposes, when new regulations from the Department of Health and Human Services were released, requiring that physician notes be available to patients through online interfaces (APIs) using the open-source international “FHIR” standard, which I’ve blogged about often on this site and on Medium.
Importantly, neither OpenNotes nor FHIR is a product you can buy: OpenNotes is simply a philosophy, and FHIR is a software standard for moving data around. The philosophy and the software standard go hand in glove, creating this shift from data about you that’s closed up in the office to data you can get at and make use of. A decade of research, with scores of peer-reviewed articles, have shown that the benefits are many and the feared drawbacks have largely not materialized. It’s a wonderful change.
For the record, here’s a log of my blog contributions from the beginning.
- “OpenNotes” project begins: what happens when patients can see the physician’s visit notes? June 20, 2010
- OpenNotes background information: WIHI webcast and Ted Eytan post – June 15, 2010
- Initial OpenNotes report: project description and baseline attitude survey – July 20, 2010
- Reflections after a specialist visit *without* OpenNotes – Aug 8, 2010
- A glimpse of OpenNotes findings: “Patients are overwhelmingly interested” – Nov 7, 2011
- OpenNotes helps me prep for a visit – Jan 18, 2012
- OpenNotes: The results are in. GREAT news for patient engagement. – Oct 1, 2012
- The OpenNotes project goes wide: a million patients and families enabled by information! – Sept 4, 2013
- Beth Israel Deaconess FAQ for their patients reading OpenNotes – Sept 6, 2013
- OpenNotes in the news: Now 3 million patients – and mental health, too – Aug 1, 2014
- From OpenNotes to OurNotes: New project heads toward *real* participatory medicine – Jan 23, 2015
- OpenNotes in the BMJ: the message goes global, adoption is international – Feb 12, 2105
- 50 million more patients to get OpenNotes! Huge win for empowered partnership! – Dec. 17, 2015
- OpenNotes study in BMJ Quality & Safety finds patient-doctor “relational benefits” – May 24, 2016
- OpenNotes on stage at live Washington Post event – June 5, 2016
- OpenNotes hits TEN MILLION patient level – Aug 9, 2016
- #OpenNotes mashup! 20th birthday of Seinfeld’s “Elaine’s a difficult patient” :) – Oct 17, 2016
- “Transforming the Culture of Care” Keynote 1: OpenNotes – Nov 29, 2017
As you can see, it’s been something of a passion.
I’ve also had a few peer-reviewed articles published about OpenNotes, or mentioning it:
- Open visit notes: a patient’s perspective and expanding national experience (Journal of Oncology Practice, 2015, with Jan Walker)
- The patient’s voice in the emerging era of participatory medicine (International Journal of Psychiatry in Medicine, 2018)
- Warner Slack: “Patients are the most underused resource” (with Dr Danny Sands – BMJ, 2018)
- Open Access as a Revolution: Knowledge Alters Power (JMIR’s 20th anniversary edition, 2019)
- Assessment of US hospital compliance with regulations for patients’ requests for medical records (Lye et al, JAMA Network Open, 2018)
An idea whose time has come
Today it may seem bizarre that so many physicians were so skeptical or scared of how the world might fall apart if patients saw their notes. But that’s the work of culture change.
I was thrilled and honored to be selected by OpenNotes leadership to be the initial patient voice of the OpenNotes movement (a role that today is carried forward by the phenomenal Liz Salmi). Wherever relevant the rationale and growing body of evidence for OpenNotes have been included in my speeches around the world, and I’m thrilled to continue today on the OpenNotes advisory board.
I have to say, this has been a damned good thing to do with my “free replay in life” after my care team at Beth Israel Deaconess saved my life from Stage IV kidney cancer in 2007. Thanks to the OpenNotes team, especially Dr. Delbanco and Jan Walker, for the opportunity to give back.