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Opening Physicians’ Notes to Patients

Steve DownsToday’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.

Second, it’s an elegant system tweak that could really affect behavior.  It’s just a hypothesis at this point, but think about how the knowledge that a patient will read a note will affect how the physician writes the note.  Of course the effect will vary by individual, but this little tweak – with a very small marginal cost – takes a task that physicians do dozens of times a day and reframes it.  As my colleague Paul Tarini has pointed out, it says that this note is for the patient more so than about the patient.  Subtle but important.  My own bet is that this change could do more for influencing how physicians see their relationship with their patients than years of training on how to be more patient centered.  Of course I could be wrong!

And that brings me to the third reason.  This is a controversial idea that needs to be tested.  As we – and Tom Delbanco, the principal investigator on the grant – talked to people, we found strong opinions on both sides of the issue.  There are many people with a patient advocacy perspective who think this is so obvious, such a right and there should be no question about it.  And there are many physicians who think – for very plausible reasons – that this is a terrible idea.  As I said in the Globe article, there’s a bit of a religious character to the debate – you either believe one thing or the other and you believe it strongly.  But there’s been precious little evidence to inform that debate.  That’s why it’s important to do the study and do it on a large scale.

So we’re all excited about this project.  It’s a simple but powerful idea that deserves a real test.  And we hope it sparks enough discussion to raise some interesting and fundamental questions.

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Tim Richardson, PTChrissemundjet e zemresTigaarRobert Hess Recent comment authors
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Tim Richardson, PT
Guest

Facebook for the patients’ chart?

Chris
Guest

I came across this blog while researching for my own piece, “When patients know too much.” I talk about the very same issues:

http://bpmforreal.com/2012/01/10/when-patients-know-too-much-bigdata-bpm-healthcare/

semundjet e zemres
Guest

I absolutely agree Robert people need to be responsible for their own health.

Tigaar
Guest
Tigaar

Sounds like a good idea, however I would be very interested in the results of this project. Yes, the patient needs to take more control of their healthcare, but we must make sure it’s fool proof and secure as hell! If a patient can access his/her records via email(which is not safe) anyone can access the record with just a little hacking. This is my main concern: Privacy!

Robert Hess
Guest

I believe this is a particularly good idea. People need to be responsible for their own health. Wellness is achieved through teamwork between the patient and the physician, which requires full disclosure of information. It might well be that inadvertent miscommunications between patient and physician can be “cleaned” up when the patient reviews the meeting notes.

Judy Ardine
Guest
Judy Ardine

I think this is an excellent practice that should be adopted by all doctors! Really, I am so tired and irritated by the medical profession considering their patient to be some dumb rube who “won’t understand” those notes or terminology. I resent being told I “wouldn’t understand” or that I ask “too many unnecessary questions” or that my questions are “irrelevant”. I resent having a horrified nurse rip my hospital chart out of my hands and my chart being kept at the nurses’ station the rest of my hospital stay. I come from the age when heaven forbid the patient… Read more »

Steven Zeitzew
Guest

At the West Los Angeles VA Healthcare Center there has also been rather open access for patients for at least a few years, although not as open as described in this Boston project. There have been a few patients who have become upset or who have disputed the veracity of the recorded notes, examination, or medical history. A process allows them to either dispute or enter information into their own charts. This openness dovetails well with the VA’s policy of providing full-time patient advocates to assist our patients if they have concerns or complaints. It has been my impression that… Read more »

Paul Levy
Guest

Dear Delilah,
The points you make have no basis in fact. You attribute much to much influence to me with regard to our faculty! Dr. Delbanco and his team came up with this research idea and submitted it themselves for the review of the folks at the Foundation. I had no involvement in it whatsoever, although I am proud to work in a place where people like Tom are pushing the envelope.

Abby
Guest
Abby

Look, if a doctor doesn’t tell me why they order a test, I always ask. I find it insulting that a doctor wouldn’t.
In fact, I’m about to schedule another appointment with a doctor, because she didn’t answer all of my questions about a procedure, wouldn’t write down the name of the drug she wanted to use and never discussed my particular situation.

PSA
Guest
PSA

Great going VA. Just wondering if the patients read the charts in Philly? Do the VA docs need a refresher course? Perhaps the hospitals should pay the patients to stay there and troubleshoot the care?

R Watkins
Guest
R Watkins

Total non-event, using this site for free publicity.

Sherry Reynolds
Guest
Sherry Reynolds

Buried in the article it points out that the VA has already been doing this for over 7,000 patients and will be rolling it out nationwide for all of its millions of patients. “About 7,000 patients in the Veterans Administration medical system can read notes, and the VA plans to roll out the system to all patients.” this is on the “HealtheVet,” platform their patient-centric health information system which . The VA already has a national health information system in place, has given patients access to their records and in Portland even lets them make their own entries into the… Read more »

Margalit Gur-Arie
Guest

Hmmm…. I should hire a better PR person. We started doing this a few weeks ago. It was a nonevent, just like MD as HELL said. Maybe it will blow up in the future, or something….

John Irvine
Guest

delilah – nobody is editing comments. this may be typepad blowing up, or it may be a connectivity. we want to hear from you, regardless of your political ideology, point of view, frame of reference, shoe size, height, whatnot. lay it on us. ed

delilah
Guest
delilah

Several comments have been deleted about this report. Editors are deleting comments that do not meet preordained ideology.
This BIDMC program is designed to grandstand for new headlines which it accomplished. For a patient to read and worry about the thoughts that cancer or some other devastating disease may be lurking is cruel and unusual punishment. This must be resultant from the PR brain storming of its CEO blogger.