A "HealthTweep" Pulse Check

Exploring transformational potential of social media

I Will License or Lease My Health Information To Providers

with 18 comments

This may be an idea who’s time has come and that just might develop traction in the market place of health reform ideas as HIPAA, legacy health information systems, and their closed/proprietary platforms, trip over each other, while “cloud options” represented by Google Health and Microsoft Health Vault make inroads into the growing consciousness associated with the  “e-patient” or “Health 2.0” communities.

Why not view the patient or member’s health information as “intellectual property” (IP) which he or she “licenses” or “leases” to health care providers during the care process?

After all who “owns” the data? Is it the hospital,  physician, or health plan? Or is it the patient or member assigned to or associated with one of more of those entities/providers? And just who bears the “duty of care” to protect this IP information consistent with the interests of it’s owner? 

I say it’s the member or patient. He/she is the rightful owner of the “data” or information upon which all health care providers or physicians rely in total or part in order to exercise judgement appropriate to the care process.

Unfornuately, while the rightful owner of the data or health information, the patient or member often has to jump through hoops to obtain the information to which they hold rightful title.

Let’s get this one right. Put the member/patient at the table as the principal who leases or licenses his/her information to care providers and let see what that does for the accountability movement we now associate with health reform conversations.

Your thoughts are welcome; please chime in.

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Written by 2healthguru

March 26, 2009 at 9:31 PM

18 Responses

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  1. Nice post, was wondering if you would allow me to link to it in a blog post i am currently typing for my own site? Cheers

    Glen Kohatsu

    March 9, 2010 at 3:23 PM

  2. Hey, i would just like to say, what a informative site! i am just researching for my blog but i had trouble reading this article as the text protruding on to the side menu…. Edit: oops! the problems my end, it is my ancient version of internet explorer causing the bug. Could be worthwhile telling people to update. Thanks.

    PCO Dave

    March 9, 2010 at 3:21 PM

  3. Hey may I suggest

    Mutual ownership of data… as the data is actually a merging of your info with their expertise and authentication.

    http://silona.org/tag/mutual-data-ownership/

    and http://silona.org/mutual-ownership-of-data-fsn/2009/06/15/ which talks about “child” data examples…

    Cheers!

    Silona

    October 14, 2009 at 10:37 PM

    • Thanks for comment and links. I need to noodle on both posts; you obviously have applied gray matter to the issue; so thanks and more to follow. I will tweet both links as well!

      2healthguru

      October 15, 2009 at 10:05 AM

  4. “The old adage that ‘possession is nine-tenths of the law’ well applies to this field. Everyone – the hospitals, the doctors, the insurance companies, government agencies, consumer groups – claims to speak for the patients. There are many well-intentioned voices among these segments but who really speaks for the ‘property-less’ patients? America is in the middle of a political stalemate vis-à-vis the efficient collection, storage and sharing of medical records. Ownership begets political voice. A national information banking system that granularly empowers patients with technological portability and control – not just HIPAA confidentiality protections – over their own medical information would provide an opportunity for firing the imagination of patients that brings real political change. In this regard, our national, private monetary banking firms already have both a significant customer base and formidable technological infrastructure and know-how. Could they, with key partners from the medical community, introduce granular information banking services to their account holders and our national medical infrastructure at large? Granular data ownership is no silver bullet. But it may well serve as a catalyst for breaking up a political stalemate.”

    Banking on Granular Information Ownership (p. 8) – http://www.scribd.com/doc/4848196/Banking-on-Granular-Information-Ownership

    Steve Holcombe

    October 14, 2009 at 12:21 PM

  5. This isn’t a good idea. To have a doctor, that for all intense of purposes is saving your life, sign a license for the right to read the patient’s medical record…? That is crazy!

    That is like asking a car mechanic to sign an authorization so he can fix your car.

    Why can’t we view a patient’s health information as IP, because it doesn’t qualify as IP.

    The purpose of IP is to provide the creators of original works economic incentive to develop and share ideas. In other words, IP is intended to protect “the creation of the mind” in order to benefit and permit or deny others the right to use the same creation.

    How does this apply to a medical record? What has the patient created? And why do they need to protect it from someone that is inherently present to cure one from a disease or provide guidance for a healthy lifestyle?

    The doctor has no other interest in the medical record than to get the facts so she can decide what is the best way to provide care for a patient. And why do we keep medical records? Because we have to for reference should we need it in the future. Not to mention federal law requires medical practice to keep med rec for 7 years.

    What if the doctor applied the same condition? Let’s assume the doctor will also require the patient to lease or license her diagnosis, thoughts, notes, treatment plan, conclusions, lab interpretations, consults with other doctors, etc.

    One can argue that the history of present illness belongs to the patient, but what about the Diagnosis? Had it not been for the doctor, the patient would not even know what condition she has.

    Instead of focusing if a patient owns the intellectual property of a medical record, why don’t we focus on things that are truly broken with the health care system?

    Brandon (aka @PediatricInc)

    Brandon

    May 14, 2009 at 7:22 PM

    • Brandon, as you will no doubt find amusing, I couldn’t disagree more. But thank you so much for taking the time to reflect your thoughts on the issue.

      The notion of an informed consent to permit treatment or the time limited release of information, is not what I am suggesting. What I am trying to argue is that the pyramid need be turned upside down. Right now all of the power lies with “the system” whether from a healthcare delivery or healthcare finance point of view, not the patient.

      The patient or consumer has to jump through hoops to access information that bears a downstream relationship to their participation in the healthcare system. It only seems right that “title” be vested with the originator vs. passed from one provider or healthplan to the next.

      Yes, medical practices, hospitals and healthplans invest in IT systems to manage their operations, yet let’s not suggest that by passing material or information to the healthcare system somehow transfers its ownership to anyone other than its rightful owner – the patient or member.

      2healthguru

      May 19, 2009 at 12:40 PM

  6. Heller wrote on the tragedy of the anticommons as a coordination breakdown where the existence of numerous rights holders frustrates achieving a socially desirable outcome. We certainly have had this in healthcare, in many respects, since records first began being kept. It has and will become exceedingly more acute as we morph from a paper to a digital representation of these records. It perhaps is not really that important who the rights holders are, but rather how the rights holders exercise (or reframe from asserting those rights) for a common social good. The common social good I see here is the ability to trade broadly in the currency of healthcare: information. But it goes far beyond a mere trade (exchange, interoperability) in this currency — not just a passive token, but a dynamic/active currency that may be retasked many times. Once we get beyond the notion of rights and dwell on the notion of social utility, in the realm of healthcare, then we can gain perspective on issues of privacy (both for the patient and for the provider, addressing Lamberts’ concern about “notes,” as a physician I know the value of notes that need not be in an official record — for many good/bad reasons). Ownership, security, privacy, fidelity of the originating information, etc. are all very entwined themes that need to be addressed in context of some grand scheme — what is it we wish to accomplish. Addressing rights up front just entrenches the existing, de facto, property owners and the notions of an anticommons. Perhaps the current emphasis is wrong, it’s not about rights and ownership — but should be about what is sharable (“copyleft”) — a true commons composed of personal trust relationships.

    symtym

    April 5, 2009 at 11:04 AM

  7. Arguing with IPR (intellectual property rights) is a very interesting thought. And I agree, that next time you tell your (new) medical doctor all about your past health history, you could in theory make clear that you own the copyright to the stories you are about to tell, letting him sign a license form. That’s why this thought is interesting… Also, you can get a patent on mice genes, so there is an intellectual property aspect to this – as long as you KNOW your health information… On the other hand, you can only “own” (intellectually) what you know, and that’s where this argument breaks down for much of the health information generated by the doctor (lab results, diagnoses etc.).
    But HIPAA and the Canadian counterpart legislation both make very clear that the patient has a right to access his records…in theory, and not necessarily in electronic form.

    Gunther Eysenbach

    April 5, 2009 at 4:46 AM

    • Thank you all for your replies.

      Gunthner: I appreciate your hybrid “sarcastic(?)” and yet exquisitely thoughtful response. Consider this, the patient or health care “consumer” or “client” depending on where you sit in the ‘ideological health reform divide’, is a current “non-entity” HIPAA and other consumer directed regulatory initiatives not withstanding.

      A paradigm shift of who is the rightful owner of the health care episode or history property is one way putting that entity in the conversation and at the table vs. our current position as some uninvited and often problematic guest.

      Suzanne: Moving the locus of responsibility to the patient/consumer is an appropriate accountability play and a sign of our times, i.e., Health 2.0, Web 2.0 and enabling social media. We have yet to build the turn key and user friendly mechanisms that enable responsible participation in the health care delivery and finance eco-system by it’s consumer or patient clients. Though I am optimistic that we’re witnessing a considerable degree of creativity and initiative moving in that direction.

      Rlamberts: I hear you; and understand your apprehension. Yet whether you ascribe to single payer or unbridled private market solutions, it’s hard to defend the doctors process of care as “intellectual property” that merits insulation from the subject’s scrutiny and/or participation. At first the idea of two sets of data seemed workable to me, but after further reflection my view is either we’re “all in” (no separation between healer and subject), or we’re just defending silos and cause for “black box medicine”.

      2healthguru

      April 5, 2009 at 8:41 AM

  8. The results of the study in this week’s NEJM about how few organizations have EMRs makes me think it is not just about the money. While I concur with RIAMBERTS that there are issues with making the record move away from physician “owned,” I wonder if we are missing the point. I believe that we need to push care and responsibility for care to the patient. This is about them…I mean us. If the goal is improved care and even prevention, doesn’t it make sense for the patient to be the owner? Doesn’t the patient have the most skin in the game?

    Suzanne Dewey

    March 27, 2009 at 11:57 AM

  9. Very scary. I see my chart as my notes to myself so I can take care of the patient. Some things I write, I don’t want patients to see (suspected abuse, for example). I would be very frightened if we used copyright as a template, as that system is terribly abused by people who want eternal privilege to the written piece. My answer: there is no one “chart” on a patient. It is information that is needed by the various parties who care for the patient. I do think the patient has rights with each record, I don’t think they should own it. Would a psychiatrist have to share what they have written? It just wouldn’t work.

    rlamberts

    March 27, 2009 at 7:44 AM

    • The patient is the owner of their health information. Yes even the psychiatrist notes and other doctor comments belong to the individual. A simple test of this is to consider “who is being served”.

      If I hire a lawyer then all the work they do for me belongs to me for my case.

      Why do doctors feel that they own their work? Who are they working for? It is the patient and their family that is contracting with the doctor for care, therefore they work for the patient and work done for that care belongs to the patient.

      Case closed.

      srinaldi

      May 9, 2009 at 5:20 AM

      • The psychiatrist’s notes are protected under law. The rationale is that these notes could be of potential harm to the patient. This makes medical sense.

        Regarding MD notes, doctors need the ability tp write confidential notes to themselves, don’t you think? What if the docto believes that the patient’s rproblems may be somatic? Isn’t it appropriate for him to annotate the record as such for his eyes only?

        Barry

        September 7, 2009 at 9:21 AM

      • Thank you Barry! Psychiatry does seem to present a unique set of data-points that might warrant separate consideration? My primary argument is in this business, if ‘you’ are not at the table, you’re most likely on the menu. The power politics of medicine wherein the payor and provider communities are the sole stakeholders with standing in the conversation, is the ‘status quo’ I am challenging. This ‘one up/one down’ paternalism is a principal driver of our too often in-penetrable silos of medicine.

        We need to level the playing field; patients or consumers of health services are stakeholders and must be at the table both metaphorically and in the most literal sense. Our system is a dysfunctional house of cards, and near ready to implode on itself. A tangible improvement will be to recognize the value of ‘participatory medicine’ or patient engagement, while honoring the needed boundaries of shaman energy in the healing process. We are your partners, not your enemy.

        2healthguru

        September 7, 2009 at 10:45 AM

    • While I can appreciate and do share the concerns you express, one way of teasing this out is that when a healthcare provider is making notes as a way of brainstorming, of attempting to get one’s bearings in a sea of symptoms that are presented, then this note would not need to be automatically part of the “common record”. It would, however, make sense that when a note becomes the means by which diagnosis is made or treatment actions are taken, then it should be part of the “common record”. And this also reinforces the notion that the patient (that’s all of us, right?) needs to be an active participant in their/our treatment and health.

      Paul Courtney

      October 15, 2009 at 4:58 AM

      • I get your point and it has intuitive appeal as well as medico-legal merit I suppose; yet, it seems like a slippery slope. Kinda like Columbia/HCA maintaining two sets of books for CMS; it just feels dis-ingenious to mois. I argue to ‘right-size’ the relationship. The patient or consumer or customer, if you will, is no where at the table in the too often paternalistic health care delivery system. I want to invert the pyramid and put the rightful owner of the intellectual property (i.e., the tissue, fluids, images, physician notes, H&P’s or consults) in the conversation as principal and not incident to the web of transactions and experiences which in the aggregate constitute the care process. Thank you for your comment!

        2healthguru

        October 15, 2009 at 10:00 AM

      • With regard to psychiatrist’s notes, it is actually only the “process notes” that are generally protected from patient access. Patients in most (all?) states have the right to access their treatment notes, that is, the CMS-compliant E&M type documentation that includes the pertinent history, mental status exam, meds, labs, diagnosis, and plan.

        I suspect that most psychiatrists today no longer keep separate process notes, unless they are a psychoanalyst or are particularly scrupulous about confidentiality concerns.

        As for Rob’s concern about the patient seeing the concerns about abuse, why not discuss those concerns with the patient? A patient once told me “I got my notes and they said my doctor thought I was an alcoholic! I was furious, because he never told me that. If he did, I might have taken it seriously and gotten help much sooner.”

        Steven Daviss MD

        December 13, 2009 at 11:06 PM


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