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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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22 replies »

  1. 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!

  2. 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.

  3. 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 should see what the nurse scribbled on her little piece of paper what the temperature, BP and pulse rate were. All that did and has done was create a great distrust of the medical profession. No medical professional gets my respect until he/she EARNS IT!
    Thank God I’ve been blessed w/two WONDERFUL family doctors in my lifetime and the opportunity to go to Mayo Clinic, MN, when I see the need despite it being a 12 hour drive one way. The Mayo physicians I’ve encountered thru the years have excelled openness and bedside manner as well as skill and expertise in their specialty. Well, EXCEPT one sleep pulmonologist NOT of Mayo calibre. I haven’t figured out yet how he’s managed to stay on staff. He was one of those condescending oafs who went out of his way to prevent my access to my results.

  4. 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 more often that patients have found this helpful. There are a number of motivated patients who have been active participants in their own healthcare and who have used their own knowledge of the medical records to assist and guide their physicians. I have had a number of patients come to me with questions or comments about the note I had written about their previous visit with me. This has been an opportunity to make sure the patient understands my clinical concerns. Skeptics about this process should note that I have always been open with my patients about my concerns. For instance, if I ordered a test to rule out neoplasm I would share that concern with my patient, but also put it in realistic perspective. If my note describes a patient’s morbid obesity it would most likely be because I had discussed this medical issue with them.

  5. 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.

  6. 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.

  7. 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?

  8. 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 chart so I am not sure why Boston, the new power center of Health IT needs to do a demonstration project? Just do it.
    (hope this isn’t a duplicate post – mine got stuck also)
    Sherry Reynolds
    Alliance4Health

  9. 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….

  10. 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

  11. 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.

  12. This is represents a seminal event in medical history. By taking this bold step forward BIDMC has disrupted the stagnant argument. In doing so, all of us (patients and providers of their care) will find improvement in how we communicate. Bravo. -JFS

  13. This should be a net positive. However, I can understand doctors’ concerns about the potential for an increase in workload for themselves or their staff to answer patient questions about the meaning of terms or the reasons for ordering tests. Also, notes like order test x to rule out neoplasm could unduly scare some patients. Overall, the number of doctors and patients involved in the pilot project should be sufficient to demonstrate whether the approach adds value or not with respect to patient compliance, correcting mistakes, or just making patients feel better informed about their medical treatment and health status.

  14. I think it is a fabulous initiative. As ICMCC we have always been advocates of full access by the patient. It will help to create what Dr. Amir Hannan from the UK at one of our conferences called “A Partnership of Trust”.

  15. This is a nonevent. Any intelligent physician has always crafted notes expecting them to be reviewed by plaintiff attorneys. So bring on the patient, too.

  16. Very interesting–great to see this kind of work getting funded. This is undoubtedly the cusp of an important trend in healthcare. I can’t help but wonder though, (and worry a little) how patients’ varying degrees of health literacy (and activation) will play into the demonstration. In an ideal world, this transparency will promote shared decision-making and collaborative care, but Dr. Delbanco’s conversational notes are probably not emblematic of all medical practitioners. Even after-visit summaries, geared toward the patient, are typically filled with argot and clinical descriptions that may elude or frustrate even the savviest patients.
    Nontheless, this is a wonderful development for medicine. I hope either the Pioneer Portfolio or the study team are also transparent and frequent in their updates on how the project is going, since that will help with diffusion and scalability down the road.

  17. A wonderful step forward! It can’t help but do good. The patient will be better informed and able to catch mistakes which otherwise might cause him/her harm in the future.
    The only downside is that the care provider will have to be more discreet about what they write! And isn’t that the way it should be?

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