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Whose Data is it Anyway ?

Doug klinger

As we know, the Federal Government is planning to spend $19 billion to help the healthcare system  upgrade its 20th century, non-standard, paper-based and proprietary system-based health records systems to a more standardized, electronic solution which will empower the healthcare system and consumers alike. This may be a side benefit of electing our first Blackberry-toting commander-in-chief. But, it’s not clear that everyone is ready to get behind the President on this one.

The New York Times just published an article entitled “Doctors Raise Doubts on Digital Health Data”.  The New England Journal of Medicine just published two articles outlining the challenges with making the electronic records dream a reality.

In a recent post on this blog entitled, “Better Records on Our Cars Than Ourselves“, we discussed the critical importance of better connecting consumers to the healthcare decision-making and delivery process. Without engaging consumers effectively, it will be difficult to drive meaningful changes in healthcare consumption, healthcare effectiveness and ultimately, healthcare cost.

While the recent flurry of media coverage on the subject of electronic health records points to many of the reasons why the Government’s plan cannot or will not succeed, let’s take a minute to focus on why it should succeed:

1. Health information belongs to the consumers whose health is in question. While the information may be generated by doctors and other members of the delivery system, it is generated on patients and generally paid for by the patients themselves or their insurers (private or government).

2. Patients can and should be able to access and share their health information. Is it really appropriate, as some have argued, for some doctors or other members of the delivery system to decide if we, as patients, are “qualified’ to have access to our own health information ?

3. Getting health records into a more standardized, usable and transferrable format will surely take time and cost a lot of money. One potential benefit of this investment of time and money may be a new partnership between those who deliver healthcare and those who consume heathcare. In an industry which is today characterized by battling between constituents over who gets what care and who pays for that care, a bit of partnership might go a long way. Cal it a pollyanna-ish view, but without a vision to make things better we are may well be destined to mediocrity.

Why not focus on what we can accomplish vs what we cannot ? Why not begin architecting a plan to migrate from reliance on proprietary systems and paper records to an open, electronic solution that brings healthcare information together vs keeping it in protected silos ?

In closing, as the New York Times and New England Journal articles discuss, it seems appropriate to debate how the new electronic information will be used to improve healthcare quality. But, this debate can proceed in parallel with an effort to make the information more readily available in the first place. Without substantive changes to how we collect, store and transfer health information, the healthcare quality debate may stay just that – a debate.

Doug Klinger serves on the board of MedCommons. Before joining MedCommons, spent ten years with CIGNA, where he served as CEO of CIGNA Dental, among other roles. His resume includes a stint with Monster.com, where he led the company’s North American unit.

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18 replies »

  1. Peter and Margalit, as a consumer/patient I want as much substantive information in my medical record as my care providers generate. I don’t want it sanitized or edited for publication – because I want any other care provider who needs information about me to know not only my vitals, meds, and history, etc. but also the thought process my doc’s followed in diagnosing my condition(s). That vital information may help another physician diagnose the same or similar condition that may occur subsequently. I want them to read that Dr. A diagnosed the pain in my back as a possible kidney issue but he/she also felt it could result from one or more other causes. It is this type of substantive information that differentiates a medical record populated by a clinician from one populated by an insurance company from reimbursement records. My physician’s notes can/should be used by other care providers who treat me; the insurance company’s records can’t/shouldn’t be.
    With regard to memory jogging notes such as you cite, Margalit, I do not think they belong in a patient’s chart. They contribute nothing to a patient’s medical record, but if you include them, IMO your patient should see them.

  2. I agree with Peter, this is an interesting discussion.
    IMHO, the medical record or the chart has two components:
    1) The hard, cold facts – Problem list, vitals, meds, test results, immunizations, etc. – The patient should have unrestricted full access to this data. It really belongs to the patient. This is the most valuable information and it would be very meaningful to another provider.
    2) Documentation of clinical decision process and other information that is not directly related to the objective patient status. I would include in this HPI, ROS, notes on differential Dx, exclusions, etc. and various comments entered into the chart that, as Peter says, may be misconstrued by the patient, and totally irrelevant to other providers.
    The interesting part is that the data in item 1) above is much easier to transport to another provider since it is rather easily codified and it is basically discrete. I think that is where the effort should be aimed at and that is where you will get the most bang for the buck. After all, is there any value in sharing with patients and other providers something like “Mrs Jones is a cranky, obese 48 years old female….”?

  3. For once I am finding the discussion on the “concept” of Health IT interesting, even though I am skeptical about the sales pitch it will save us money.
    If health information is to be considered the IP of the patient who leases it for viewing/changing/adding/subtracting to health professionals will that change the way docs record their input on health records? MD, do you put observations in patients records that are “pertinent” to the medical treatment of the patient but which the patient could misunderstand or find “insulting” if they read it? And if patients had to “sign-off” on changes to medical records would that inhibit what you record? Would patients then get to be their own editors and how accurate would that make medical records?

  4. Let’s not forget that the consumer paid cash for the ipod and itunes and any other media stored on it. They did not get it from the government. No insurance company would have covered it.
    A government designed ipod would have cost ten times as much, edited the content, carried a warning about computer vision syndrome and earbud irritation, and have to be powered by photosysthesis to deminish the carbon footprint.

  5. MD as Hell Writes “The doctor’s work is proprietary… the intellectual property of the doctor.”
    An interesting POV; yet IMJ it couldn’t be further off the mark. The Wisconsin law referenced by Dr. Dan Johnson gets closest to the issue’s correct nature and granularity.
    I will take Wisconsin’s statutory wisdom one step further: the patient is the sole principal/owner of all “intellectual property” (IP) which by necessity includes all tissue, fluids, and related health information; whether clinical, administrative or legal. The IP is then situationally and proactively “leased” or “licensed” to the provider during the care process.
    All providers, whether physicians, allied health practitioners, or institutional health care entities, systems or parents, are agents who bear the “duty of care” with respect to the proper handling of the patient’s (or member’s) intellectual property.
    Whether the “bucket” for the repository of health information is a flash drive or cloud based solution (MS HealthVault or Google Health), for me resides on the cloud side, authentication or privacy challenges to date notwithstanding. The cloud solutions are inevitable, IMJ.
    So my take on the question originally posed, is it’s the patient’s and/or member’s data; though an argument can be made for provider co-ownership during active episodes of care, or other relevant intervals.
    See post on subject here:http://2healthguru.wordpress.com/2009/03/26/i-will-license-or-lease-my-health-information-to-providers/

  6. Peter, the consumer-focused system I envision does not require patients to enter their medical record data. Moreover, I don’t want them to even try. I want care provider-created records that clinicians can rely on! In our system, the doc’s staff uploads patient records using automated data entry, and the doc gets paid a fee for them doing so. To the extent the patient wants to enter non-clinical info (social history, insurance and contact info, etc.) they can do so. Studies we and others conducted tell us that if an individual can’t handle a computer, their children or friends will do it for them.
    Looked at in a broader context, what is required is a complete SYSTEM for handling patient medical records — and that is what our MedKaz™ System is all about (medkaz.com).
    I think of it like the iPod. There were MP3 players several years before Apple launched its iPod, but none of those earlier manufacturers were successful. The market was small and few were sold. When Apple entered the market, what happened? The market exploded, Apple garnered more than 75% of it, and Apple continues to control more than 75% of this vastly enlarged market (I believe more than 170 million iPods have been sold!)
    The lesson to be drawn from the iPod success is that they brought all the pieces together in an easy to use system. Their device was superbly designed and easy to use. They made buying music and managing play lists equally simple. And their business model ensured they made a profit!
    That’s what has to be done with patient health records. We can’t rely on computer nerds or the established EMR vendors to meet the needs. If they knew how, they would have done so already. Neither can we rely on the government to design a solution — they’ll create the healthcare equivalent of the Post Office when what we need is FedEx!

  7. Merle, which group of patients are you talking about (the patient is far more interested in his/her health than any care provider)? They may be interested but having the skill set to manage records is another thing. What do you do with the aged, uneducated, undereducated, computer illiterate? As for the check box comment I was envisioning computer nerds making the health system conform to the software using the box a,b,c system to enter health information – is that not part of health IT to get it to work easily?

  8. Ravi – re: “I am pretty sure that these can be achieved with far less money and can address all the concerns. It is question of infusing innovation in the product development process.”
    I agree that we need an innovative solution to the problem that has befuddled healthcare for years, and that is precisely what we have done! To learn more about our breakthrough solution, visit our web site: healthrecordcorp.com and medkaz.com.
    MD as HELL – You put the doc at the center of a patient’s healthcare universe and seem to consider the patient disinterested and/or irresponsible about his/her health. I do just the opposite! To me, the patient is far more interested in his/her health than any care provider and will select from among the many providers out there the ones they want to go to — which is why the patient should have copies of his/her records from every care provider, and should control who accesses them. It’s like the old joke about the pig and the chicken approaching a restaurant offering ham and eggs on their menu. The chicken says let’s go in but the pig says no — from you they want a contribution but from me they want total commitment!
    In short, I believe that both the docs and the patient should have copies of the patient’s records, and that this parallel record system will result in improved care for the patient and at a lower cost. And before you raise the spector that the patient might change the record, let me say the record can be locked; if the patient finds a mistake, he/she can attach an addendum noting the correction.
    Perseus – On what basis do you say there is “no profit in your ideas”? On the contrary, our business model is financially self sustaining and makes money for the docs! Others solutions being advocated depend upon grants or subsidies and cost docs money. Which would you prefer?
    Peter – The patient or his/her primary care doc, for a fee, can manage the encrypted backup copy of the patient’s personal lifetime health record. I can’t respond to your other points because I don’t understand what you mean by “checking the appropriate boxes” and “dis[re]garding comments so it fit the computer.”

  9. I agree with MD as Hell and I don’t think letting the patient carry around and manage their own records is workable – who’s going to manage the backup copy. If someone asked you to provide tha last five years of tax information would you be able to even find it? MD has made a great point about the difference between patient and doctor records. I think the best solution so far is to scan records at source and electronically transfer them when necessay. Trying to make records nothing more than checking the appropriate boxes (my life has never fit inside a check box) and storing them centrally (where?)while disgarding comments so it fits the computer does nothing for the patient or the doc when trying to interpret medical condition. This is why a strong, well compensated, skilled and stable primary care system is vital (walk-in clinics fail here) – who knows your health best (other than you) than your family doc?

  10. Yeah, then next we can automate the lawyers! I’m sorry, but there’s no profit in your ideas.

  11. All this emphasis on EHR and centralized storage and access will do is create the need for two records on each patient: the public and the real. The doctor’s work is proprietary, the intellectual property of the doctor. Value is added by her/his interpretation of findings. Just sitting in the room with the patient often provides information that the simple verbage will miss. The experienced doc will get it; the newby or wannabe or midlevel will miss it. Yet such clinical judgement is risky. Patients will often lie or recant under public scrutiny what they privately reveal. I can imagine that mental health records will be especially empty of reality. The patient will naturally be his/her own worst enemy by witholding vital information for the very reason people think will be to the patient’s advantage. In fact, EHR and sharing information has never been for the advantage of the patient, nor the doctor for that matter.

  12. Margalit, all the studies I read clearly indicate consumers increasingly want control over who can access or use their medical records, and they want to be certain the information is correct. Moreover, HIPAA requires that a physician give copies of a patient’s records to the patient if the patient requests it. Thus, like it or not, a patient will get a copy of his/her record and is free to use it as they wish. Having found numerous serious errors in my personal medical records which would have gone uncorrected if I hadn’t caught them, I think this trend is healthy for all concerned. And if you read today’s posting “BIDMC, Google Health and the data transfer problem,” I think you will agree as well.
    Margalit and Shelly, you both seem very confident that information stored on servers (whether on a web-server or a physician’s server) and accessed via the Internet, is safe and secure. What have you seen or read that warrants your trust that such a security system exists today or might be available anytime soon? There isn’t a system extant — including the Defense Department — that can provide absolute security, and the long list of stolen records and instances of supposedly secure sites being hacked, make it clear that any system out there can be breached. So why should we spend hundreds of billions of dollars to build electronic networks when they are an invitation to disaster (the bigger the database the more attractive it is to hackers)? And how is that less “risky” than a patient carrying their records on an encrypted flash drive?
    Similarly, why do you assume that a clinician’s notes or test results delivered to another clinician by the patient would be suspect or of little clinical authority? It is incredibly simple to lock a record so neither the patient nor the doc can change it. Yes, if a sophisticated hacker tried to do so I suspect they would succeed, but how many patients could do so? Personally, I’d trust a locked record carried by the patient rather than a document I received over the Internet from a vulnerable server.
    Finally, the complexities of ensuring that the right person’s information is accessed over an Internet system that links individual physician databases (a la the NHIN), is problematic. So far, even Rand Corp says that even if we spend $11 billion per year on a patient identifier system, we can’t be absolutely certain the right patient’s records are being accessed. (How many John Smiths are there and how sure you get the records for the one you are treating?)

  13. Excellent post Doug and I couldn’t agree more. A consumer or patient’s personal health information does belong to them and they need to work as a team with their physician and share data in a secure and meaningful way. I don’t agree that patients should be walking around with their PHI in a box or on a USB drive (just too risky) but there are studies currently being conducted around how physicians and patients can share data electronically between the physician’s EHR and the patient’s PHR (that they own and is portable) in a very secure way that provides patients with ownership of their data in their PHR in the event that they leave that medical practice or move.
    The great thing about these new forms of electronic data exchange is that they are utilizing new health IT standards (e.g. CCR, CCD) and existing formats for secure transfer (e.g. PDF-Healthcare) so, once the technical, legal, and process issues are worked out, the data-exchanges can be replicated with any EHR and PHR systems that are built to communicate via these standards and also have the support (e.g. nurse coaches, detailed instructions provided to the patient, appropriate and approved consent forms, etc) so that the patients will actually learn now to use the PHR, how to accept and validate data coming from the physician, how to select and send updated data back to the physician before a visit.
    Even if the physician does not currently use an EHR, the patient can create (via one of these standards) a ‘snapshot’ of relevant information (meds, problems, allergies) in their PHR and bring with them to their visit in the form of a PDF file. Or, they can grant the physician access to their PHR for the physician to review prior to the patient’s visit (although the current business model does not support this but some physicians will value this access to patient PHI)
    So, my point is that yes it is important for physicians and patients to share data and for the patients to become more engaged in their care as act as a team-player. This is all very complicated but the good news is that there are studies being done right now to determine the most secure, efficient, and user-friendly (for both physician and patient) methods of sharing data electronically between systems that will stay with both the physician and the patient if the patient were to move or see other physicians.
    Patient feedback, survey results, and time will tell how effective the data-sharing will be and how it might actually help to improve patient clinical outcomes, improve care-coordination and disease management and prevention, and strengthen the patient-provider relationships. My prediction is that we will see some very positive and promising results.

  14. 1: In Wisconsin, the law states what I believe should be a universal principle: the medical provider and the patient jointly share ownership of the medical record, of which the provider has possession. The patient has the right of access to every word in the record.
    2: Nearly all the entries in the record are chaff to the provider on later visits; the detail is of “interest” only to litigators and payors. The provider needs to be able to know the data regarding permanent changes in health status, especially histologic reports of surgical specimens, radiologic interpretation of abnormal images, abnormal laboratory values and subsequent normals, and the specifics of medication allergies and intolerances, physical observations and tests that are abnormal, accurate family history, accurate social history, accurate medication history, and diagnoses with lasting implications. Nearly everything else is noise.

  15. I don’t think that the ability to move clinical data, or medical records, is aimed at communication with patients necessarily. The real value of moving data is to reliably exchange clinical information between various providers engaged in care of the same patient.
    I don’t see why the patient has to be the delivery mechanism, either by actually carrying the data, or by aggregating it in some non-secure commercial portal. Data should flow directly from one provider to the other and replace the current method of faxing paper records. Data should also flow to third parties (deidentified)for the purpose of research and study and creation of guidelines.
    Data that is using the patient as aggregator would probably have less clinical authority. I’m not sure how many physicians will rely on patient reported test results for example, or any data that may have been entered/edited by the patient.
    As to the internet, Merle, I don’t believe in massive PHR databases in the sky, but I do believe that internet access (read only) to the chart maintained by the primary care doctor should be available to all patients. They can choose to share that access, or not. Basically the PHR should be maintained by the physician and should be a patient’s view of the EHR.
    I totally agree that patients have a right to their medical records, but I would limit that to the factual portions of the record. I don’t think patients have a right to the physician’s decision making process that is often documented in a chart.

  16. Re: “3. Getting health records into a more standardized, usable and transferrable format will surely take time and cost a lot of money.”
    Not necessarily. If we open our eyes and take the “blinders” off, we can make patient medical records available when and where they are needed, simply, cheaply, safely and quickly.
    By starting at the consumer end of the cycle and working backwards, the solution jumps out at you.
    If the patient assembled all their records in a box and brought it to his/her physician, the physician would have all the patient’s records – but they would be unmanageable. So, what if we scanned copies of all the patient’s records (handwritten or electronic) on an electronic device? We still come up short: the patient wouldn’t have to carry a box but the records would still be unmanageable. So, what if we index these digitized records so they can be sorted?
    Now, we’ve got something! The patient carries the device, gives it to the doc, and the doc can quickly find the information he/she needs to treat the patient: the meds they take, their chronic illnesses, their medical history, records of prior encounters with care provider, etc., etc., etc.!
    Now we have accomplished a small miracle: we have provided the patient’s records to the care provider when he/she needs them – and in manageable form.
    We also have accomplished some other important things. First, we have given the patient control of their records and who can access them. Second, we have avoided storing patient records on the Internet and, thereby, avoided the security and privacy issues inherent in Internet accessibility. Third, we didn’t have to force physicians to change the way they keep their patient records. Fourth, we didn’t have to build networks linking the care provider “silos.”
    Have we solved the problem simply, cheaply, safely and quickly? I think so – and it wasn’t even hard!

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