Mind the Gap

It’s a simple idea – show patients the notes that doctors write about them– but it’s also a dangerous idea … in the best sense of the word. It’s dangerous because the very idea forces a conversation and in the course of that conversation, some uncomfortable tensions surface. Jan Walker and Tom Delbanco, co-directors of OpenNotes, a project supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio that enables patients to see their doctors’ notes via secure e-mail after a visit, published a preliminary set of results from their first study. Actually, it’s just a pre-study: they surveyed doctors and patients about their expectations of how the OpenNotes idea would play out. And what they found is fascinating – and uncomfortable.

Doctors and patients are clearly divided about the expected benefits and consequences of the OpenNotes intervention. On a wide range of possible benefits, ranging from a greater sense of control to increased medication adherence, doctors are more skeptical than patients. But what really jumps out are the responses to questions of whether patients would find the notes more confusing than useful, and whether the notes would make them worry more. The gap is dramatic. In each case, most doctors said “yes” while less than one in six patients agreed. Ouch. That’s a big gap and my sense is that we should be talking about what it means. From my perspective, it appears that many doctors are underestimating their patients and that this underestimation could lead to less patient engagement and ultimately poorer care. Call it a hunch.

To be fair, doctors are a varied lot and the paper shows clearly that doctors who chose not to participate in the study are far more skeptical than those who did participate. But even those who did were still way off from their patients on questions of confusion and worry.

As I mentioned, these are only the expectations and the year ahead should bring plenty more to discuss. The results from the one-year demonstration of OpenNotes should be available for publication in the spring.

What do you think of these initial results? What do you make of the gap? And how do we start to close it?

Stephen J. Downs is the Senior Technology and Information Officer, Robert Wood Johnson Foundation.

22 replies »

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  2. Erin,

    Thanks so much for such a thoughtful articulation of why it matters to see the doctor’s notes about oneself. I’m really looking forward to the study’s results so we can learn what patients in the three (very different) trial sites actually did with this ability.

  3. Medical records are not a science as Dr. Mike says above. They are clinical and may not quite be an accurate discription of the visit (they report truthful information but they leave out the human part of the interaction). Even then I believe that medical records should be easily available for patients to read.

    I believe obtaining copies of your medical records is of the utmost importance in managing your own health. When we see doctors, we aren’t taking notes, we may be emotional, we may not understand what they are saying. So how can we be relied on to relay this information to another medical provider on our treatment team. Many people don’t even know the names of the medications they take let alone the names of the medications they’re allergic to or the procedures they’ve undergone or the complicated names of their diagnoses. The best bet to make sure you have all this information, is to have a copy of your medical records and to develop your own personal health record. Some of your test results may be online. But those mean little without the notes that accompany them.

    Currently amassing these records is no small feat. To obtain records, you have to sign a HIPAA release form from each provider. But to actually get a copy of the records, you have to pay. In Texas, hospitals can charge:

    A retrieval fee up to $30 for the first 10 pages
    $1 per page for pages 11-60
    $0.50 per page for pages 61-400
    $0.25 per page for the rest
    The cost of mailing

    And that’s for paper records. If you want your records on DVD you can expect to pay $40 more. So 100 pages put in an easy DVD format can cost $150 (if I can still do math?) – a prohibitively expensive amount for most people to get a copy of your records (An issue you can and should address in your state legislature).

    I am grateful to see the changes in health care involving the patient in their medical treatment. (Though certainly that comes with drawbacks – patients misunderstanding medical care or demanding treatment they don’t need). Being able to obtain records at all is actually a fairly recent development in medical care. Until the late 1990’s, patients did not have a right to view their own medical records – there was a sort of a paternalistic view that providers should only discuss information they felt we needed to know. The doctor had complete discretion whether to release that information and who they would release the information to. Effectively this left patients in the dark about their own care. This was changed with the Patient’s Bill of Rights adopted by the US Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998 and updated by the Affordable Care Act.

    Now we have access to our records (if we can afford them) but that comes with other issues. Understandably, doctors did not want to release their own personal notes in a medical record. Perhaps they fear a lawsuit. If a doctor does not feel free to write what he thinks is important for fear of being sued, he may change how he takes notes. More important, patients that have a copy of medical records may have no way to interpret them except looking for information to understand them online or elsewhere which may be incorrect. And without knowing what the notes mean, it may lead to more patient harm (i.e.: patients worrying or asking for care that really isn’t necessary because of something they read online)

    But the public interest of being a part of your own health care and keeping that information confidential outweighs any argument that your records should not be available to you.

    And this is incredibly important. Personally, I’ve made an effort to collect my medical records for the past 10 years from every provider I’ve seen (which is about how long most providers are required to keep their records). In so doing, I learned that I was not allergic to a drug I thought I was, but in fact another drug. I also found I had taken a drug that I forgot I’d tried before. And I talked to a doctor about a mistake he made in my chart. I learned the reasons for my doctors’ course of care that I forgot over time. And I was able to convey this information to my current providers and be part of the discussion about my health care.

    Encouraging individuals to understand their own health and health history and making that information available and easily accessible is one way we can transform our health care system. Knowing what’s in your chart is empowering. It has been said, knowledge itself is power. Understanding where your health has been and what options you’re pursuing for treatment is as important as a captain charting a course for their expedition. Doctors still rely on patients to provide the information they need to help you and they don’t always have access to that information (though you can ask health care providers (though you may not remember the providers you saw in the past and thus their notes cannot be shared) to share them with each other and they will do so for free, but you will not get a copy).

    I urge every person to learn as much about their health as they can. I advise developing a personal health record (PHR) to take to each doctor appointment. Part of developing a PHR starts by obtaining (if financially feasible) and understanding your medical records from each doctor or health care provider you see (including hospitals, labs, therapists). In the future, health information technology may facilitate gathering and coordinating these records through health information exchanges (HIEs) and cloud computing. But developing your own PHR allows you to be a part of your health care with your providers. Instead of doctors reading notes online or from another doctor, you can discuss the notes and decide what treatment is best for you or why a certain treatment isn’t working (this is called patient-centered care – including the patient in the decision making process) because you have seen the notes too. You can ask questions about items you don’t understand or discuss with the doctor if you find something inaccurate (we’re all human and doctors can make mistakes in transcribing their notes). If you leave town and need to seek medical attention, your PHR will help the providers give the best treatment. But to develop a comprehensive PHR, you need to have access to your doctors notes…

  4. Thanks for all the comments – and it’s great to see the debate about the impact that OpenNotes could have. The good thing is that it won’t be long before the research team can share the full results of the study, which should illuminate a lot of the questions that inevitably get raised. They’ll be able to say a lot about questions of whether doctors are modifying their approach to writing the notes, whether their time is being consumed dealing with questions or disputes about the content of the record, and whether patients are finding errors. Margalit’s question about whether it will lead to better care is a great one and while the study does not track health outcomes specifically, the team should be able to identify whether there are any indications that would suggest that it would lead to better care. So stay tuned for the full results.

    The comments so far focus on the overall desirability of the OpenNotes approach, but no one has really addressed the questions I’ve raised about the large gap in expectations – that so many doctors believe that their patients can’t handle the truth (and patients overwhelmingly believe that they can). What do you all make of that gap? How serious an issue is it?

  5. Addendum: as we move to EMRs, with the expectation that the note be completed during the office visit in order to maintain productivity, inaccuracies and discrepancies will become more common, and will be spread throughout your entire record, becoming more difficult to correct and remove.

  6. I understand that I have not given you enough information to fully understand the situation, so your conclusions are based on a subset of the history/decision making, etc., that occurred. I’m sorry I won’t explain this in gory detail to give you the big picture – that wasn’t the point.

    This went on a tangent about what you thought I meant by “event” – I’ll just refer back to my original comment regarding discrepancies in the record contents and what I was told or not told. Perhaps originally I should have just mentioned the first two examples – incorrect information and the unrevealed diagnosis (both of which had been important for me to know) – and not relayed a third example – that I had been lied to about what was in the record.

    The issue of discrepancies was my focus, and it appears that message was clouded. I don’t think it’s unrealistic that my records be correct, that I should be allowed to confirm them, and that I should be told all test results.

  7. The doc’s note is a analytical synthesis of the most important aspects of the history, exam, and decision making process during and after the office visit.

    If you expect a documentary record of everything that occurs during that visit, it is up to you to create your own record, or to audiotape or videotape the visit.

    Sorry, but your expectations of what should be in the medical record are unrealistic.


  8. Southern doc … I think I was pretty clear about my thoughts regarding notes made during visits. Going into any more detail isn’t really relevant to that original point. Regards.

  9. A sharp pain in your ear was an event that negatively impacted your health?

    Sorry, we’re not talking the same language.

  10. As this event was something that occurred during my visit and negatively impacted my health, I asked that the event be put in my record.

  11. Again, why did your yell need to be a part of your permanent medical record?

  12. southern doc … I was there simply to get a prescription refill for something unrelated. She was doing the routine screen – “take BP, listen to your heart, look in your nose and ears.” My ears were fine – no infection or anything.

  13. “Recently the doc pushed an otoscope so far in my ear I reflectively yelled. I asked that the event be put in my chart.”


  14. Keep your own record. The quality of the encounter should not be affected by the record. If it is, then one of you had a hidden agenda and were not honest in the encounter.

  15. I want the doc and patient to discuss the notes before the visit is completed. I’ve seen incorrect info much later, and seen a diagnosis years later that I was never told about. Recently the doc pushed an otoscope so far in my ear I reflectively yelled. I asked that the event be put in my chart. I was told it was. I had to call back (unrelated issue) and wanted to confirm it was added to my chart. It was not. I had to go back to the clinic and demand it be included. The doc blew me off and walked out of the front office At that point, I had to demand a copy of my patient records and I wouldn’t leave until I had the doc’s verbal acceptance (in front of the office staff) that this event would be recorded. I received the records, with her “sanitized” version of the event.

    This situation blew out of control because she didn’t want anything in my record that she could later be sued for, and as a result, I was lied to and blown off. She was eventually reprimanded, but I never would have known had I not tried to confirm the records were correct.

    I now ask every doctor before I leave the appointment exactly what was written in my records. It’s sad I have to do this, but as Dr. Mike says, the records aren’t for our information, although the records should support our needs as well as the doc’s (except the need to spin the visit to avoid lawsuits).

    Will reviewing the notes together take more time? Can a doc write and speak at the same time? Personally, I don’t care if it takes a little longer if it forces a conversation and confirms the outcome of the visit.

  16. Try and imagine having all your conversations and activities documented by another party, and that the other party assumes that you are potentially going to sue them someday. How would that change what they document about what was or wasn’t said in each conversation or what was or wasn’t done in each activity? You should try it yourself – after the fact, document a conversation or activity, and assume that the other person will sue you. See if you can write a note that doesn’t cast your words and actions in the best possible light. Now imaging the other person reading the notes, and imagine if they could possibly disagree with your description of what transpired.

  17. You would have to change the payment system in order to effectively share notes with patients. We are paid based upon what we write about what we did, not on what we did, so notes have become almost useless as means of conveying a meaningful summary of what transpired at the patient/doctor encounter. EHRs have only made this worse. The patients guess that our notes contain a useful summary of the visit or encounter, the docs know that they are full of fluff and sometimes meaningless medical speak because that is the only way in which we can be compensated for their services, and because we must document in a way that protects ourselves in the event of a lawsuit.

  18. My guess is no, no, and no.

    This innovation will be expensive and time-consuming to gratify the wishes of the entitled few.

    I’m more concerned about my patients who have no computer, no job, no transportation, and no insurance. What are we going to do for them?

  19. I don’t see a problem with this. That’s what patient portals are supposed to be for, ultimately. Yes, the notes will change and yes there may be disputes over “charting by exception” content, which could have ramifications to coding.

    But here are my questions: are people that receive notes in better health? are outcomes translatable into better care? are costs of care lower?

  20. I recently read a note about myself that contained the results of many assessment tests that were not done. Maybe having the patients read the notes will make them more accurate.

    I also remember reading the notes after having my 5th child at age 36. I was amused to see I was an elderly grand multip. Writing that about someone else is one thing. Reading it about myself just made me laugh.

  21. The content of notes will change. I don;t think too many patients want to read they are “massively and morbidly obese”. I alos am qiute certain that doctors will have to devote a lot of time over disputed content in said notes. Nothing good will emerge from this.