Ending Secrecy: Physician Makes Case for Full Disclosure of Health Records – My First “Perspectives” Column in iHealthBeat

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Ending Secrecy: Physician Makes Case for Full Disclosure of Health Records – iHealthBeat

8 Replies to “Ending Secrecy: Physician Makes Case for Full Disclosure of Health Records – My First “Perspectives” Column in iHealthBeat”

  1. Hi, Ted!

    What always strikes me about these debates is that we tend to have a hard defining the core issue. This for me primarily comes from the ingrained metaphor of the "medical record" as a tangible paper chart – a thing that your patient (way back when) picked up and thumbed through. Within that artifact there are certainly things that we'd rather not share with patients – not so much because they are "secret" but because they are not designed in such ways that they communicate effectively with patients. As physicians, we are fairly adept at reading between the lines of our fellow clinician notes and dictations. Patients, on the other hand, have not had the luxury of this exposure in the past.

    In short, for me the issue is not so much "sharing the medical record" as it is re-envisioning what a patient's medical data/information/knowledge is – and could be – and from there designing ways we can make these data/information/knowledge truly useful for them.

    Thanks for the compelling post!

    Dave…

  2. Dave,

    You come from a public institution, where transparency of records (of the non-medical kind) is the norm. How does it shape your internal communications with your colleagues?

    I don't think that physicians are that adept at reading between the lines of a medical chart. Counting on this is where medical mistakes come from ("I know Bill is a good doctor, I'm sure he did an abdominal exam on this patient."). Since our profession and society wants physicians that are more diverse (ethnicity, gender, sexual minority status) we should also not count on this because physicians who come from different backgrounds may not be reading the same things between the lines.

    If we created a health information technology philosophy that stated that any time data is being exchanged about a patient, is available to the patient, won't that change the way we record things for the better? (see this post about "The Fortunate Man" where the doctor's treasured role is as clerk for their patient's lives),

    Ted

  3. Ted,

    Great article and I wish more physicians out there read this article and hopefully are convinced to change the paradigm–be more transparent. I cannot agree with your more when we often hear: "If it's normal, you won't hear anything"? I recently experienced this when my new born son was given a battery of tests–I told the doctor, I need to be informed regardless–he smiled and agreed; Fortunately the tests came back normal–but I was relieved (more so) when I received the documentation–

    There should be no "first among equals" when it comes to sharing information between a physician and a patient–

    Cheers,

    Ramesh

  4. Ted, I think we're in complete agreement in a belief in "information freedom." What I was trying to convey (not so effectively) is that I see the discourse on sharing medical records carried out with the mental model of the paper medical record in our heads. I think that makes the debate far more unproductive, because – as you say – patients do not want (never did, actually) the medical record. They want data/information/knowledge about themselves. And the more they get these things in the form of the archetypal paper medical record, them more they will say "give this to us in a form/format that is useful."

    I also agree that we need a new metaphor for the medical record. We've come from the turn-of-the-century model of the medical record as the physician's ledger to the early Mayo Clinic model of the hospital-centric paper record to the modern Larry Weed SOAP model… And perhaps we are now poised for the next major evolution. I can't quite yet envision what that will be (other than generic ideas like multimedia, connected, versioned…) but I hope I know it when I see it!

    BTW, the NEJM essays out this week on the potential ill-effects of the PHR (or PHCR, as they define it) should certainly add to the dialog.

    Thanks for making this forum available, Ted…

  5. David…that makes sense, and the beauty of a blog is you can make sense because the conversation doesn't end.

    This is a bit of an experiment for me (not iHealthBeat) in writing for established media, and reflecting commentary here on a blog. Thanks for participating,

    Ted

  6. It looks like you're making good use of your sabbatical experience, Ted…nice to encounter your blog, and I enjoyed this piece in particular. I expect that the world will gravitate toward your "open source" patient record soon. The 'asterisks' on such thinking would, I think, relate to protection of sensitive information, preservation of confidentiality, and prevention of identity theft and related scams that attend broader, more relaxed access to data.

    Here's what really interests me about such thoughts: They suggest rethinking the role of "the professional" as we create more egalitarian worlds of thought and information. One of the central elements that characterizes a profession (classic sociology here) is that its members preside over a domain of special knowledge and skill.

    (A nice, quick-read Powerpoint show by Michael Plaut, with particular reference to some of those confidentiality concerns in the context of the professional role, is at http://medschool.umaryland.edu/professionalism/pr

    When once-restricted knowledge is freely available (and not just in the Wikipedia sense of a mass of data, but as "right-now" information that can properly guide behavior), how does that affect the common man and professional?

    Dissemination of knowledge is democratizing and empowering for those who have been its purchasers heretofore, and who as more-or-less passive recipients have sustained a hierarchy rather than participated in and contributed to it.

    For the professional, that same diffusion can be threatening, but also opens up new and powerful opportunities. The most powerful opportunity is shedding older, often-rehearsed behavior patterns (prior, narrow ways of 'being a doctor') and beginning to operate in realms of relatively low-cost, rapid-access knowledge.

    Such opportunities will surely include broad and participative access to information that is important to all parties to a transaction, no matter what the professional milieu. Like an open-source medical record…

    Thanks again for your post, Ted, and regards from the Center of the Universe…

    Bob

  7. Hi Bob,

    I really liked the slides that you suggested, especially one of the last ones where it said "We can ask ourselves 'would I do this if someone else were watching or knew about it?'" in regards to professional behavior.

    I think it's important for physicians to know that health care leaders such as yourself are interested and engaged in helping the profession change to help our patients better. We don't have to do this on our own. Thanks again,

    Ted

  8. Thank you for the well written article.

    I totally agree that Patients should have complete access to all their health records. HIPAA does not care what the patient chooses to do with their own health information. HIPAA protects the patient from the doctors and other "Covered Entities" that could do damage to the patient as they are the ones with access to the patient data.

    Thanks again for the nice article and proper perspective doc!

    -Y

    MyDoctor.MD

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