“I’ve only been interested in this for about 30 years” – talking with Tom Delbanco, MD and Jan Walker, RN, MBA about OpenNotes

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: “Patient review (of doctors’ notes) remains the rare exception, and roadblocks abound” : 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:

My view of complexity, click to enlarge

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.


A study of the century and game changer to be. Most days I talk to physicians and nurses about shared records…resistance is common.

So even with wildly positive results (my predictions awhile back: http://www.sharedhealthdata.com/2010/06/13/prediction-with-open-progress-notes-another-grand-slam), agree that lots of changing of mind-sets will be needed.

Time to sharpen our social marketing skills, raise the volume of patient voices, use it as a delightful opportunity to change documentation skills & requirements.

The future of participatory medicine: resistance is futile.

Hello Sue!

I was thinking of you and you work when I wrote this post :), are your findings available/complete?

And, tell me more about the framing of this as fighting resistance, I’m curious if this is seen as the most effective approach to inspire people with confidence?


The analysis of our qualitative study of the My HealtheVet Pilot project (where Veteran patients had access to the full record) is aobut 90% complete. Expect findings very soon.

The ‘resistance is futile’ was aimed at the future — where full access to records will be the norm & we’ll look back and wonder what took so long 🙂

So I wasn’t suggesting framing the issue as fighting resistance. Minds get changed when there is perceived value. How to gain that value proposition? Certainly the data. But also the stories — how patients/consumers get more engaged, how they become their own “reminders” (perhaps reducing burden on clinicians), how trust goes up and the relationship improves. Also demonstrating a LACK of negative consequences will be key. No chicken little, the sky is falling…

A tall order? I think not.

Ahoy Sue!

I’m glad to hear it – I think the data from the not-as-well-publicized “natural experiment” at the VA will be extremely useful. I wish we had more of these to draw on.

Re: resistance, I’ll be honest, I don’t think that’s the best way to craft a vision of the future. I did a search on this blog, 4 years worth of content (and lots of “dialogue” about whether this was good or not), for all the times I mentioned “resistance,” and it turns out it was reacting to others’ use of the word. This post summarizes my feeling about it..

What’s your take on shifting the dialogue away from that? What would you use in its stead?

I’m asking you because you are a (my) thought leader in this space and I like to ask you such things :).


Ted Eytan, MD