I had the occasion recently (today) to speak with Tom Delbanco, MD, and Jan Walker, RN MBA, who are leading the study team for Robert Wood Johnson Foundation’s OpenNotes project (also, see this link, and tweet @pioneerrwjf ), one of my favorite RWJF projects, one of my favorite research project anywhere, actually.
Why? Because OpenNotes is comprehensively studying what happens when physician progress notes are made visible to patients. I actually wrote about this project when it produced one of its landmark publications last year, so I won’t repeat what I said then about why it is important (see: “Now Reading: â€œPatient review (of doctorsâ€™ notes) remains the rare exception, and roadblocks aboundâ€ : OpenNotes Project (Annals of Internal Medicine)“).
I didn’t discuss how things worked in practice, though, and they work like this: When a patient sees their physician, they get an e-mail letting them know that the physician’s note is complete and ready for full viewing. In addition, when they make a follow-up appointment, they receive an additional e-mail encouraging them to review the physician’s note from the last visit.
I will repeat what I showed then, which is a diagram I made about the complex web of interests and influences that results in the current state of access by patients to this part of their medical record – very little to none:
What’s the update on the project since last year?
The study involved 107 physicians at multiple institutions and 21,000 patients. Its 12-month run ended this summer and the team is now in data analysis phase. Papers will be prepared and submitted for publication, hopefully with final results by Summer, 2012. Even though the study period is up, Tom told me, patients who had access to physician progress notes in practices being studied still have this access.
In terms of what they’ll be looking for, it will be the answer to a simple question:
“Will the patients and doctors want to keep the machines on or off?
Leading changes in transparency
Even though we don’t know the results of the study, we talked about what it has been like to be a proponent of transparency in the past (my bias, I am a proponent of such), and what it might be like in the future, when the study results are final. I like what Tom said, which is “The world is made of nervous people,” meaning that evidence is helpful, attention is helpful in producing change, and understanding this up front will result in an environment more supportive of the change.
Tom and Jan wrote this op-ed recently in Modern Health care. I’ll link to it here just in case you have access to the world behind its paywall. In it, they state that current proposals to make lab results available to consumers is not enough and that “our expectation is that the short- and long-term benefits of open notes will far outweigh the harms.”
Tom told me that he sees himself as more change agent than professor, and from that perspective, I am excited that this work will translate into something very useful for OpenNotes patients and their descendants. Stay tuned, there is more to come.