The Parable of the Wicked EMR

Preface by e-Patient Dave: This is a story of bad data gone wild, wrong info that spreads. It starts with a story from the 1600s, which applies all too aptly to our EMR situation today, in which there are inadequate controls on data quality, and errors that leak can be impossible to contain.

It was a scandal. In 1631 two London printers published an edition of the bible that omitted “not” from the seventh commandment. [It should have said “Thou shalt not commit adultery,” but it didn’t.] The public outrage over what was dubbed the “Wicked Bible” was loud and immediate. King Charles I heard about it, and was incensed. This simple mistake by print compositors landed their employers in the Star Chamber before the infamous Bishop Laud, where they were tried, found guilty, and fined 300 pounds. They also had their print licenses withdrawn; the fine was directed to be used to for a new set of print typefonts and to oversee new quality control practices to prevent such a mistake from ever again occurring in the future.

The episode of the Wicked Bible has historical importance because it demonstrated how the new print technology allowed printers to create “standardized” errors, something impossible in the scribal era when all books were the product of hand copyists. Textual drift – the result of small copyist’s errors in single books, which were then repeated in the next copy, and so on – was no longer possible, replaced by the textual fixity of print type. If printing presses could greatly lower the costs of producing books, and make them available to whole new classes of people to read, they were also capable of mass producing errors!

Enter e-Patient Dave. As we all know by now, Dave asked to have his hospital’s electronic medical record system upload his health data to his Google Health account, only to find that the diagnoses transferred were claims data that were largely unintelligible and meaningless to Dave, and some of the problems listed were downright inaccurate or false.

Wicked EMR! How is it possible that that such mistakes could be made? Not exactly the Word of God, but most people trust that their health information is accurately recorded inside the EHR technology of the hospitals where they are cared for and treated.
Plus, since insurance billing records are transferred to the MIB, an insurance industry database that insurers use to check patients for pre-existing conditions, errors in billing records can have serious effects, as the Consumer Reports blog reported last August. A truly wicked consequence of a propagated error.

Hundreds of blog posts later and two articles in the Boston Globe, here are my takeaways from the Parable of the Wicked EMR:

  • Hospitals must recognize that more and more of its customers will want their medical records in electronic format, and help filter and organize these data, rather than just “dump” them to the patient’s chosen PHR, in this case Google Health.
  • Dave’s healthcare providers need to help keep the data and information available in terms that patients can understand, along with coded data, and be aware that reconciliation at discharge in CCR or CCD format will be valuable to them. This will help them check for errors (free quality control!) and empower them to be increasingly responsible for their medical information.
  • And the PHR companies need to continue to help bridge the gaps that exist between health data in EHRs and IT systems, some of which is largely incomprehensible, and organized sets of information available in patient-understood terminology on the Web.
  • Finally, as Dave is proving every day, the patients/consumers have to take some responsibility for feedback and additional commentary until we all get this right.

The good news in all of this is that so many people actually care about e-Patient Dave’s experience getting better. It’s lit up the blogosphere because it’s important. This isn’t about blame – it’s about improvement to the point that patients get accurate and up-to-date summary health information about themselves at every point in the health care system.
A few questions that we might want to answer before this is all over:

  • How can it be that a doctor’s list of problems/diagnoses and those that the hospital uses are not the same? Is this an error, or is there upcoding and possibly abuse of the system going on?
  • If Dave’s doctors had acted on the data sent from the hospital to Google that was incorrect, and Dave was harmed in some way, would he have a legal cause for action against the hospital? Against Google?
  • If these billing data are inaccurate, wildly so in some cases, then why are we using them for analytics and quality research? For disease management?
  • If Dave’s billing data in the hospital EHR/EMR system is actually data from someone else, ie. another patient, then is Dave prohibited from seeing his own chart due to HIPAA privacy rules?
  • Isn’t it time for there to be a patient right to summary health data that is digital, up-to-date, and accurate?

We don’t have access to the same recourse King Charles had; we’re not likely to arrest and fine those who mismanaged the “sacred” data. But if you ask me, we ought to have the same sense of indignation, and the same commitment to hunt down and eradicate the Wicked EMR.

This posting was originally published on e-patient.net and is republished on THCB with permission of the author.

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57 replies »

  1. Security for EMR is a major concern. EMR solutions providers must adhere to strict guidelines. Doctors and practitioners must take this seriously and thoroughly investigate security of their data before implementing a solution. This is where value provides can help physicians.

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  3. Dear Commenters All: Claudio said something very important, in my opinion. He said:
    “The applications aren’t to blame — we’re seeing the consequences of junk data being exposed without review. It’s just a taste of the skeletons that may lie in the data closet. It’s also worrisome, because it may make hospitals reluctant to adopt the level of transparency that 21st century medical data requires.”
    I love this description! “junk data” and “skeletons in the data closet” Isn’t this the problem, that we are using data somewhat recklessly, without review, and in “the closet,” meaning out of sight?
    What Dave wants, what we all want as patients/consumers, is accuracy and currency of the data, and its review at proper intervals by our care providers.
    But it will take a lot of effort to get us there. How do we get there? is a legitimate question. Do we need new laws? Consumer pressure? An Obama-like campaign?
    Let’s do it!
    Regards, dCK

  4. Excellent topic.Thanks for commenting. Indeed, most of these points are not new. Unfortunately they seem to be forgotten by a lot of people in health care.

  5. I wonder whether you exagerate these problems, for obvious reasons … or whether I just happen to practice in an area where things are not that bad (my own large MSG does a good job handing out chart copies, and I know that Mayo and most other area facilities do well). There are some offices/institutions that are slow or unreliable, I will admit that. The most straightforward approach to this would be to cite/fine those. But of course innovative solutions are great … I just don’t see the need, not to that extent (and some other problems if patients can create completely selective charts). But time will tell.

  6. In general, a patient usually knows his or her own history. Compiling all your own records from all providers strikes me as unnecessary and not needed for care. It may be an exercise undertaken for another purpose.
    It would be extremely evident very soon that a rolling record from provider to provider would become so useless due to errors and perpetuated inaccuracy that any doctor would be negligent to rely on it. The doctor must start over and must verify everything that might be suspect.
    After five or ten years, a sick patient’s record could take a day to review. Medical care will grind to a halt. On the other hand, if it were limited to “just the facts”, it might help. Facts are surgeries, pathology reports, lab reports, images, diagnoses based on reliable and reproducible information. This would exclude most mental health diagnoses, all fibromyalgia, all vague aches and pains.
    Such an undertaking should be done as a pilot program with a real population, a single state such as Connecticutt (small enough but large enough). It would be easier for them to flee to neighboring states if needed to escape the monolith. If it worked it could evolve and propagate to other states. If it flopped, it could be undone without massive disruption of real medical care.

  7. rbar,
    You and many other posters have commented that patients can get their records from their physicians by merely asking for them, at least in part because the law (I’ll leave it unnamed) requires it.
    At the risk of sounding argumentative which I am not trying to be, I must ask if you have ever tried to assemble your own medical records. I have, and it was an experience I wouldn’t wish on my worst enemy!
    Each physician and hospital told me it would cost a considerable amount of money and take one or more weeks. When I agreed, they promised to send my records to me — all in paper form even though several had sophisticated EMR systems. After five or six months, I threw in the towel and gave up. Several physicians simply couldn’t/wouldn’t give them to me! It was one of the most difficult, exasperating tasks I have undertaken!
    There’s got to be a better way. I think we have found it but only time will tell.

  8. I generally agree that communication between providers is paramount. However, I refer about 2x/year to subspecialists at the Mayo Clinic, and they sent all data (to me as the referring doc), without the need for further requests. In fact, written communication to the referring provider is a prerequisite in order to bill for a consult.
    There still is substantial fragmentation of efforts in the US system, in part triggered by patients, some of which are wandering rather aimlessly from provider to provider.
    But in times of HIPPO, you can get the records that you want, as long as the patient can identify the provider in question.
    I personally don’t think a flash drive will be taken care of with sufficient reliability by many patients. Anyone knows the numbers for something as basic as medication compliance? They are pretty bleak.

  9. Mr. Bushkin,
    I don’t send my patients to just any chucklehead. It is not random. Great patient care requires great people, not a great system.
    The problem with the EMR is that it is only needed to accomplish what the vendors want, which is to sell me a product that controls and tracks patients. I think a flash drive would be fine for the patient to carry. But I don’t need a national, central, monolithic anything to take good care of the patient.

  10. MD as HELL,
    Two clarifications. First, the additional income is after any clerical costs. It’s what you or any other PCP would take home. Second, in the system I described, uploading a copy of your notes to the patient’s portable device doesn’t send the patient’s record to a “central planning database.” It merely puts it on the patient’s device — which the patient owns and controls. Even “big brother” can’t access them unless the patient lets them.
    On the broader issue of whether a patient’s record should be readily available to any care provider when and where they need it, everything I’ve seen, experienced, heard and read tells me you are in a distinct minority.
    In today’s world even the most able, competent PCP or Family Physician frequently finds it necessary to refer their patients to specialists and most cannot afford to take the careful, deliberate approach you follow. Similarly, when their patient returns from the specialist, the referring physician generally receives very little info back from the specialist about their mutual patient.
    Even in the largest networks, like Kaiser Permanente and Mayo Clinic, when a patient is treated out of their network, their records generally are not available to the “outside” care provider, and vice versa. That’s why in the increasingly fragmented/distributed healthcare world of today, we must develop better ways to exchange information among care providers so the patient receives better care, does not suffer unnecessary mistakes or incur unnecessary costs.

  11. Mr. Bushkin,
    If I were the patient’s doctor I would know everything about him without any records, unless they were new to me. I would see him or her over time and know all about his family, his work, his habits, his life.
    I would know all that because I would talk with him or her. I would have a relationship with him.
    As for making more money, the $25k would not cover the cost of the extra assistant necessary just to interact with the central plannig healthcare database. There would be no extra money. I would retain as confidential anything the patient did not want released to the governent. And if the patient wanted to be in charge, they could do so up to my professional limits of not being able to endorse certain patient choices.
    The patient would not need a next care provider unless I needed to refer him for specialty care of one sort or another. I then send all of my notes and a cover letter to the consultant so they understand the reason for the referral. None of this is rocket science.
    In fact the national EMR is nothing more than an all out assault on basic liberties and freedoms. There is no need for it, except to control the access of patients to healthcare of their choosing in private.

  12. MD as HELL,
    What if your patients came to you with copies of all their records that you could electronically sort and search to find whatever clinician-provided information you need, and you were paid for your assistant to upload your notes so the patient’s next care provider had similarly current information when they treat the patient — and the payments you received over a year would total more than $25,000? In short, you’d be able to provide better care and make more money, too! Or would you prefer to ignore such available information and plod along doing business as usual?

  13. All of this bruhaha over patients controlling their own records is unnecessary. An informed patient can simply write his or her own record. Who needs a doctor? In fact, they really want to subvert their doctor, so have at it. Write your own. Put it on FaceBook. The patient knows better than the doctor that they had procedures xyz on specified dates. They know they have illness abc. They know they take meds and what they are.
    As a doctor I would love a well thought out summary from the patient about medical facts. Please include a detailed family history. Most patients don’t know their family history very well. A history of occupations and travel is helpful. Please attach imaging files you have obtained or know the tests and results, along with centers that performed them.
    I don’t need to construct this monolith. The patient has the most to gain. Let them do it.

  14. I’m a newcomer to healthcare, and it truly pains me to see how divisive this argument is. The problems around EMR and EHR are very solvable — and they have been resolved in other industries already.
    It’s pretty common practice to build an application that presents different views of data to different audiences. With EMR/EHR, it’s entirely possible to have the same data presented to clinicians in one fashion and to patients in a different fashion. Unfortunately, the state of the art for most of these applications lags decades behind business software in most other industries.
    The lessons that we should take from ePatientDave’s story are that we’ve stumbled in our first baby steps towards useful PHRs. The applications aren’t to blame — we’re seeing the consequences of junk data being exposed without review. It’s just a taste of the skeletons that may lie in the data closet. It’s also worrisome, because it may make hospitals reluctant to adopt the level of transparency that 21st century medical data requires.
    I for one, believe that proper medical data will follow the standards of financial data. After billions of dollars and years of effort, That industry has achieved privacy, security, trust, and integrity of data with ecommerce and online banking. There are scores of lessons to be learned from banking and other industries for medical records.
    I firmly believe in participatory medicine — with checks and balances. Physicians may have years of training and experience in medicine, but they can’t possibly match the time and motivation that an educated patient has in their own case. It’s a shame not to take advantage of patients as resources in a structured fashion. In any other industry, it would simply be referred to as “crowdsourcing”.
    Unfortunately, the conversation has become needlessly divisive. It’s seems easier to shout about “us” vs. “them” in the media or in a blog, than to have a dialog about “we”.
    The doctor-patient relationship will evolve into something else.
    It has to.

    About me: I’m an information architect and creative director, and I’ve been active in building applications and web sites since the early 90s. I am a principal in a design firm that’s had to design applications for audiences ranging from K-8 to practicing scientists, sometimes in a single site.

  15. Hi, David, welcome back to the fray you set in motion! Hopefully it has highlighted some of the issues that have limited and continue to limit advances in healthcare delivery and personal health records. If we don’t change our approach, neither Dave, you, I, nor anyone else will be any better off for all we spend on healthcare than we are today.
    Personally, I’m flattered that rbar took the trouble to look me up and to visit my investment banking web site. I strongly believe that the solutions to improving care quality while reducing costs will come from business people collaborating with care providers and I am proud to be among those trying.
    Today’s IT systems have no traction, which indicate they aren’t meeting consumer or care provider needs. Whether the innovative MedKaz™ System we have designed is viable, only time will tell. If we have it right, everyone will benefit. If we don’t, my investors and I will lose a lot of money. That’s what our free enterprise system is all about.
    As a businessman, it is clear to me that the primary barriers preventing dedicated physicians and other healthcare providers from achieving their goals are business issues, not medical. So I hope care providers will encourage business people to formulate and implement innovative solutions, whether as vendors, as board members of healthcare institutions, or in any other ways they can.
    Together, we’ve got to restructure our healthcare delivery system so it improves care quality and is financially viable for all parties, including care providers, patients, payers, employers and government.

  16. Wow, it seems in the heat of traded and imagined insults, we’ve lost sight of the original post. To me, Dr. Kibbe’s post indicates there are 2 major issues:
    1. accuracy of what is in the patient’s medical record, be that record one kept by the hospital, the dr.’s office, or Google Health or other patient-accessed database.
    2. usefulness of the information in the EMR/PHR (or whatever you want to call the data transferred out of the hospital/office to an outside database) to a) the patient, and b) another doctor trying to treat the patient; and who will pay for having the information accessible to both dr. and patient.
    There are obviously problems with both #1 and #2. Can we agree it’s imperative to solve #1 before we get to #2?
    As a retired pathologist who used to perform autopsies, I am very familiar with trying to decipher a chart on a deceased patient, totally unknown to me, to find out what they thought was wrong with him/her prior to performing the autopsy. In addition, I often performed chart review while working up a surgical pathology specimen. Yes, charts can be very inaccurate! I have found lab data from other patients in there. I have also noticed that once a symptom or purported diagnosis is recorded in one consultant’s note, the other consultants often just copy it instead of taking their own history from the patient, thus promulgating the error all the way to the discharge summary. Sometimes I could see a radiologist’s report in the chart, and then a completely inaccurate interpretation of that report in a clinical note in the same chart. And yes, ICD-9 codes often only reflect a diagnosis that is being considered, which may later be ruled out.
    So, in addition to the Joint Commission-required medication reconciliation to be performed at discharge, there needs to be a diagnosis reconciliation at each discharge, to ensure the final version of the chart is accurate. Perhaps the powers that be can concentrate on that before we get to our high-flying ideas about who gets to see it and correct it.
    As for #2, patients and new treating doctors reviewing the data from some interoperable EMR or PHR, this is a whole new can of worms. The level of detail required for a patient is not the same as that required for a new treating doctor. So, as a commenter above queried, will there be 2 different forms of a PHR? If so, who will pay for the layperson’s “translation”? Will a new treating physician be able to trust a “patient’s FORCED correction of ‘inaccurate’ data in his PHR”? Will a new treating doctor expose himself to liability and the patient to harm by taking EMR/PHR data at face value for further treatment? These are open questions to me, and not answered by accusing either patients or physicians of “arrogance” and “opacity”.
    And please, spare me the “gotcha” of how to spell HIPAA. This is a favorite game on these health blogs and is truly on the 3rd grade level.

  17. All Good Friends and Commenters: I hope when the dust settles, you’ll all agree that it’s Dave’s perspective here that is the one that counts. He wanted and still wants an accurate, up-to-date, and verified summary of his most relevant health information. He wants someone or some ones on his health team to take responsibility for providing this on a routine basis. Is that too much to ask of a health care system that spends 17% of the GDP on an annual basis?
    The interesting thing, is that Dave is willing to share this responsibility with his providers.
    Kind regards, DCK

  18. OK, Merle and Gilles, since you insist on seeing bad motivation and poor attitude in physicians who disagree with you (or pointing out for the 2nd time that I misspelled HIPAA), let me try to explore the attitudes and motivations of your camp:
    Gilles’ ACOR appears to be a laudable effort, but substantially tied to the drug industry and unlikely independent:
    And if this, Merle, is you,
    I can tell – from visiting your companie’s website: http://www.bushkin.com/
    You are a “banker thinking like a business strategist”.

  19. Margalit,
    To mix a metphor, I think we are writing on different frequencies! Where did you get the idea I want maintenance of the patient’s medical record to be the patient’s responsibility? Or, for a patient to be able to change his/her record?
    To me, the process is simple and straightforward. The physician keeps his/her records in whatever form he/she wishes — on paper or as an EMR. The physician gives his/her patient a copy of this record (in my system by uploading it to the patient’s portable device). The patient can review it and if he/she finds an error, merely adds an addendum to the physician’s note correcting the error. Similarly, the physician can correct a patient input error in the same way — by addendum. The net result, the next care provider has the correct information in hand when and where they treat the patient.
    Two comments. First, when I object to physicians putting down patients, or treating them like children or fools, I am criticizing their arrogance not their intelligence. In contrast, when I read criticisms that patients are irresponsible or aren’t smart enough to make their own decisions, to me that is criticizing their intelligence and competence to act intelligently in their own self interest.
    Second, hackers don’t hack databases because they want to read the data in them. The head of security for a major network recently told me that they hack into databases for two very simple reasons: to prove they can or to sell the information to people who want it for not-so-nice reasons, like governments for espionage, insurance companies to deny coverage or employers to terminate high risk employees. And, yes, these people do care if you have diabetes or psychiatric issues! And that’s what consumers fear can and will happen! Don’t take my word for it, read the studies!

  20. I almost agree with you too, Gilles.
    There should be a process defined, through wich the patient should be able to force providers to make documented changes to medical records in the event of blatant errors.
    However, I don’t think that a patient upon discovering a scary diagnosis of Depression (311.0) in his medical records (for which he was treated with Paxil) should be able to go ahead and notify the physician and then make a change to just plain Stress (308.3), reasoning that “hey I was just a little stressed out about my divorce…that’s all. Why would he say depression in there?”
    When the errors are obvious, like CVA when the patient is 25, healthy as a horse and only went to the doctor for a strained muscle from the last Marathon he ran, then yes, change is easy and straightforward. The problems are going to rear their ugly heads when things get subtle and complex and intentions are not quite clear.

  21. rbar,
    thanks so much for providing fodder for this discussion. As Merle as already told you, we have never heard of HIPPA but HIPAA (Health Insurance Portability & Accountability Act) is an entity I have known for a long time.
    In the 90s I was an active member of the National Cancer Institute workgroup on the potential impact of the proposed HIPAA regulations on clinical trials recruitement & data collection as well as on SEER data collection and transmission to central repositories 🙂
    I also know a thing or two about informed patient behavior since over 60,000 of them use ACOR DAILY! Since we have archived every conversation that has taken place since we started in 1996 you can rest assured that I do talk as an expert of the impact of the relentless shift from your model of patient-doctor relationship (the paternalistic model) to the model that will permit the healthy reform of the system (the deliberative model).
    I NEVER refer to patients as customers since I strongly believe medical care is a universal right. And I can see that you probably have not been a patient yourself. As e-Patient Dave so brilliantly says “people get radicalized when it gets personal!” Have you ever tried to get a copy of a real and complex medical record? The pain, costs, aggravation and loss of time associated with that activity is a real scandal and a result of the paternalistic model being in charge of medical records. It’s high time for a radical change, as Peter Neupert wrote recently.
    Of course, when you provide people with tools that emancipate them they usually become much more rational. I am convinced that patients having direct access to their EMRs and control of their PHR will bring a significant decrease in utilization, particularly with the forthcoming sea change in health insurance coverage for millions in the Nation.
    I almost agree with you but would add that although fixing the errors in an EMR should not be the patient responsibility she/he should have the possibility to promptly force changes after notifying the doctor’s office or the hospital of the error.

  22. Merle,
    I have to partially retract my statement that you do not really engage in a factual discussion – unfortunately, your 1:31 post coincided with mine.
    So let me respond: you experienced a rather egregious mistake by a physician, and you corrected it the right way, with the current regulations. I listed some possibilities of how this can happen, and unfortunately, yes, there are very many patients providing inaccurate past med. histories – saying as an incorrect self diagnosis that they have “restless legs” or that they were diagnosed with a certain condition while chart review reveals that one of the previous physicians merely entertained the thought of that diagnosis as a possibility.
    Re. a medical database – I know that the idea is not very popular. And yet I am convinced that it is the best option. Remember that the EMRs (that are going to grow) are accessible via the net – don’t know how save those are (in general, other people’s interest whether you have e.g. diabetes and hypertension or not is limited and not enough motivation for hacking a database). I can tell you from my own practice (and I practice in an affluent, well educated area) that only a tiny minority will take care of such a device. If such a device is easily accessible in the office or ER and you take the responsibility that the data is correct and complete, I would be pleased to work with it. I don’t think it’s a solution for everyone, though.

  23. Merle,
    Ooops, you got me on the HIPAA acronym. And yet, you don’t say anything about HIPAA’s practical implications, which I am reasonably familiar with after repeated HIPAA training.
    You don’t put anyone down?
    Let me quote from your own posts:
    “It’s time to wake up and stop treating consumers/patients like children or fools.”
    “it isn’t necessary to cloak your every move and patient charts in mystery!”
    “Why do you insist upon putting down patients?”
    I think that some here (incl. myself) made reasonable arguments why a 2nd MR (or a mandatory electronic “translation of MR info for regular consumer use) is not such a great idea. you are welcoe to disagree – that’s what such boards are for. But instead of responding to these specific points, you just make assumption about the writer and assume vicious attitudes and motivations. In general, I would suspect that physicians who engage in these kind of discussions are rather open to dialogue and don’t consider themselves the center of the universe.
    I think that HSA are patr of a different discussion. But there is research demonstrating that if you have patients shoulder a larger part of their own medical bills, you prevent both unnecessary and necessary care. Not everyone is as interested, well informed and conscientous as you might be.

  24. Merle,
    Let me make this crystal clear:
    I am all for patient unlimited, on-demand access to his/her entire medical record.
    I am opposed to making the maintenance of such record the patient’s RESPONSIBILITY.
    If you think that physicians are doing a lousy job at maintaining accurate medical records, how good do you think a lay person would be at validating and aggregating clinical data?
    And when something goes wrong, are you going to hold Joe Plumber responsible for having received harmful treatment based on his “patient controlled” medical record?

  25. rbar,
    I don’t know about Gilles but I have not heard of “HIPPA.” I think you mean HIPAA.
    And in response to your question “Is the customer always right?”, no — but neither is the physician. Physicians are mere mortals like their patients, not God. Why is that so hard for you and other physicians to understand?
    Why do you insist upon putting down patients? No one that I’ve read on this or other blogs puts down physicians. We merely want physicians to accept us as the decision makers about our health. We want your advice, guidance, recommendations and collaboration, but it is up to us to choose a course of action. To be able to do that intelligently, we need all the information we can assemble.
    On the subject of costs and insurance pools, I share your concerns but arrive at a different solution. You want the physician to be the gate keeper of care in order to keep costs low. I’d rather give patients health savings accounts and let them decide if they want to spend their money wisely or foolishly. Which approach do you think will keep costs down?

  26. Gilles, I am sorry, but I get the impression that you do not know what you are talking about. Have you ever heard of HIPPA? Do you know how medical records are transferred most of the time, and how easy it is to check them out personally or by mail (it just takes a signature)?
    Now, this specific discussion may be part of a larger one. Is the patient really a customer only and a physician an entrepreneur selling certain services?
    You can debate about this question for hours and hours. Let me give you a very simple, practical answer: when consumers determine (based on their preferences, without medical reasons) what specialists they are going to see and what tests they feel they need, health care becomes unaffordable. If patients want to do this and feel stringly about this option (and some do), they are free to do so … but I do not want to be in the same insurance pool with those people. I.e. I don’t want to be paying for other people’s absolutely gratuitous specialists’ visits, MRIs, sleep studies etc.
    I am all for universal coverage with progressive contribution by everyone … but not in order to finance MRIs for episodic migraines and back surgeries for pain (with neutral of negative long term outcome). And most reasonnable people would agree with that assumption.
    Merle and Gilles and others, what do you think? Is the customer always right?

  27. rbar,
    Re: HIPAA rules – I’m fully aware that my care providers must give me copies of my medical records but many patients aren’t. Moreover, how many physicians voluntarily do so? Do you? Thus, most of us poor souls don’t know what is in our records until a problem arises — when it may be too late.
    Re: my MR “beef” — it’s interesting that the first possibility you cite is “a) you did not provide a good history.” Do you really think I or any other patient would mistakenly say I have asthma, hypertension and diabetes when I don’t and never did? The error was clearly the physician’s but I might have paid a very serious price. And that’s not “paranoia.” On the other hand, if I had a copy of that note, I would have caught it early on. Wouldn’t we all be better off if both the physician and the patient reviewed the physician’s notes and could catch mistakes? “Errare humanum est” or doesn’t that trusim apply to physicians?
    Re: a patient-owned device vs a “central medical database” – Virtually every study of consumer attitudes indicates that a majority or more are deeply concerned about the privacy and security of their medical records, and I think rightly so. Call this paranoia if you like but the risk and consequences of breaches, data losses and thefts are very serious. If I were critically ill I guess I’d weigh the possible loss of privacy against the possible loss of my life and I’d take the risk. But I don’t have to make that choice if I carry my lifetime medical record with me on an encrypted device! And if I carry it with my house and car keys, I’m fairly confident I’ll have it when I need it. On the other hand, how useful would it be to have my medical records aggregated on a web server in a natural disaster like Katrina, a tornado, or a simple power outage? My device can be self-powered like an mp3 player. You’d be out of luck!
    I think you and I have seen this movie before. You place implicit faith in a physician’s ability to keep your records straight and correct (preferably on a Purkinje system, I assume) even as the amount of time they have to spend with you and on their administrative activities keeps shrinking. I, on the other hand, recognize that they are human and despite their “years and years of (medical) training” do make clerical mistakes that could have very serious consequences for me. So I want to help ensure my records are correct.
    And to me, your analogy to financial records — which many others cite as well — is way off the mark. I get transaction receipts and monthly statements from my bank and credit card accounts so I can reconcile my accounts and catch mistakes. I get nothing comparable from my physician. More importantly, the worst that can happen to me if my financial records are breached is I’d lose some money (which probably is insured). How does that compare to the possible loss of my life, my insurance and/or my job?
    In answer to your question “what’s the big deal?” about consumers wanting to see and control their medical records, I can only suggest you talk to your friends and relatives and read the dozens of consumer studies that have been done. It is a very big deal and the sooner care providers and EMR system vendors recognize it, the better off we’ll all be!
    Gilles, amen!

  28. Gilles, I am not advocating opacity. I most definitely think that patients should have access to their entire medical record. I am opposing the notion that patients should have RESPONSIBILITY for maintaining their medical record. There is a big difference between the two.
    My opinion is that the Primary Care physician, or the Medical Home, should be doing that just like TexBryant wrote above. I as a patient should be able to view that record at will. What I don’t want to be responsible for is correcting transcription errors in my medical record. Physicians are supposed to read a transcribed document before they sign it.
    There must be an element of trust between a patient and his/her doctor exactly because medicine is nothing like the banking or automotive industry. If that trust turns out to have been misplaced, then by all means, switch doctors, and it will be the doctor’s responsibility to transfer your medical record. You should of course have the option to “check it out”.

  29. I don’t know on which planet rbar, PookieMD and Margalit Gur-Arie live but it is clearly not the same as mine!
    Reading, in 2009, this kind of dinosaurspeak, where docs are supposed to be so special and so specialized that no one else can understand what they say is a proof of such misplaced arrogance that it could make me laugh if the life of patients was not constantly at stake. Medical errors kill. Informed, engaged and activated patients don’t!
    Maybe they should remember that “Patients are not Add-Ons!” Medicine doesn’t exist without them. They are the center of interest and they own the bodies treated by clinicians. And therefore it looks pretty clear that they should have full access to the EHR/EMR/PHR content, with the understanding that physicians also have a right to some privacy when they write personal notes about their encounters with patients.
    Margalit misplaced comparison between her bank account and the EMR is interesting. If you don’t like a bank you can just send your money to another one. You don’t need to do anything else. We just know that a specific amount will be transferred. But if you don’t like a doctor you need to be able to move your medical history from a medical office to another. We, as patients, have no idea what will be transferred. It is understandable that we want to see and verify the content of that medical history since the risk of having an MR with transcription errors is very high.
    The time where doctors, and their offices, where protected by opacity is OVER! We have entered a period of great opportunity for any physician who can embrace full transparency and of great pain for all the others. Just as it should be.

  30. In the IOM’s “Crossing the Quality Chasm” under What Patients Should Expect from Their Health Care: Information–You can know what you wish to know, when you wish to know it. Your medical record is yours to keep, to read, and to understand. The rule is “Nothing about you without you.” The intent of this book is keep the practice of medicine focused on the needs of the patient. The best businesses know this; in quality circles it is termed Voice of the Customer (VOC). By the way, businesses who pursue this course excel; just look at Apple and Toyota. You may think that healthcare is nothing like these businesses, but according to Crossing the Quality Chasm, it should be.
    One way to get around the obstacle of a hospital’s EMR and Google PHR failing to interface correctly, is to have patients get their records from their primary care physician, who should have all data relevant to the patient. This approach is supported by the Patient-Centered Medical Home model.

  31. rbar, very well said.
    On top of that, I don’t want to be responsible for managing my medical records. I want a medical professional with years and years of training to do that. And I want that medical professional to be responsible for the medical record and what it represents. I also don’t want to be responsible for managing my bank account. I want the bank to do it for me. Sure, I want to be able to check it out periodically if I so desire, but HIPPA indeed already takes care of that. So I really don’t see what the big deal is here. Just because somebody found some errors in a medical record? People find errors in financial records all the time. That is not leading me to compulsively add all the numbers in my monthly bank statements on a hand held calculator every month. Heck, I never even open that envelope. And my banker never took an oath before engaging in business.
    Dr. Beller, That software that you are describing, is it intended to be used by the patient? It bears much resemblance to preventive care, disease management and clinical decision support all rolled into one. A good EHR will already have most pieces in place, but not for patient use.
    I have to reiterate Peter’s question here: who is going to pay for it? Is it something that the patient has to buy in order to manage the medical record, or is it something that the doctor is supposed to purchase and maintain as part of a well appointed EHR? In either case it will not be at a negligible cost and someone is going to have to provide a business case for a physician to bear the cost of PHR tools.
    Maybe the various public PHR companies out there will deploy such tools for free. I don’t understand their business model anyway, unless there’s more to it than just “helping people”.

  32. Merle,
    Acc. to HIPPA, every patient is entitled to receive copies of his/her chart. The only obstacle to this is transcription lag – that is, if you go to a doctor, your transcription from that vist will not be available since it needs to be dictated and transcribed. I find your assumption “But it isn’t necessary to cloak your every move and patient charts in mystery!” hardly appropriate.
    So what’s your beef? You had a MR related problem that you could figure out yourself – most likely
    a) you did not provide a good history
    b) the doctor did not listen well or just made stuff up
    c) he (carelessly) copied some inaccurate old or outside info.
    Or some mixture of the above.
    How does this problem prove that there is a need for a separate patient directed MR?
    Re. the device you suggest, I think it would be a blessing if patients and doctors really work carefully and consistently with it. A central medical database (e.g scanning all doctor’s notes paid by medicare and everyone else’s choosing to participate) would work much better, even in emergency situations during which you may not have the device at hand, or for patients bad with taking care of paperwork.
    Some problems with making charts mandatory reading for the patients are:
    -suspected substance abuse (patients are often in denial)
    -suspected somatization or other nonorganic factors with an impact on health (dito)
    -suspected malingering
    -unusual behavior (e.g. doctor shopping) by the patient or his/her family
    I feel that some patient advocates, maybe due to the experience of poor care (real or perceived), create unnecessary adversity and paranoia. If you, as a patient, feel that you don’t get reasonable answers to your (reasonable) questions, you should probably just see a different physician.

  33. PookieMD and rbar,
    It’s time to wake up and stop treating consumers/patients like children or fools. They’re neither. They, not you their physicians, are the center of their respective universes. And they, I think it safe to say, have a stronger interest in their health than you do!
    You have chosen a wonderful profession and I’m sure you are very good at what you do. But it isn’t necessary to cloak your every move and patient charts in mystery! Indeed, a patient’s medical record should contain clinician-speak so other clinicians understand precisely what you mean. However, much of what goes into a patient’s chart is hardly technical, and the portions that are more general should and can be understood by the average patient.
    As an example, when I applied for a life insurance policy and saw copies of my medical records, I found that I supposedly had a history of asthma, hypertension and diabetes. This was easy for me to understand even though I am a mere layman! According to this clinician’s note, I was a pretty sick puppy! More importantly, it was wrong; I have never had any of those conditions. After great effort, I got my chart corrected (and I got the correct rating for my life insurance policy). But imagine if it never was corrected and I took very ill. What treatments would have been denied me for fear they would trigger an adverse reaction to one of these diseases?
    In short, I want my records to serve two simple purposes. One is to tell a clinician the technical details they need to know about me. The other is to tell me what my condition(s) is/are and what I should do about it. And I don’t consider these purposes to mutually exclusive. In fact, most physician’s records contain just such a combination of data. So why shouldn’t the patient have a copy of their records?
    And I take this argument one giant step further. If everyone of your patients had copies of all their medical records, they would be more informed, their records probably would be correct, and you would have all available information about your patients when and where you treat them. You could practice better medicine and treat them better. They might be healthier thanks to your care and their understanding of what they have to do to stay or get healthy! And the cost of caring for them probably would drop!
    Contrary to what many would have you and everyone else believe, we can do just that today. We can aggregate copies of a patient’s medical records — both paper and electronic — on a device he/she carries on a key chain or wears, and they can give it to you to when you treat them. You, in turn, can access, sort and search its contents to find what you need to know about them. And when you upload your notes following an encounter (a service for which you are paid), the next care provider will be equally informed about your patient!
    To make this work, it is not at all necessary for you to install an expensive EMR system unless you want to and the government doesn’t have to subsidize you or pay to establish elaborate networks to make your patient’s records available to you and their other care providers! How’s that for simplicity?

  34. Religion is full of dogma, but medicine isn’t. In a digital world, the “not” would have been found by a computer long before any human would see it. As dogma, the computer could have been instructed to correct such obvious mistakes in an instant and then the correct information could be available instantaneously in every place and every language.
    You may have noticed that the bible has gone digital too. Mistakes will continue to be made, the difference is that when electronic, the mistake may only last for a billionth of a second and may never be repeated.

  35. I think part of what is missing in all this dialogue – which is good stuff, but to me incomplete – is that the problem isn’t that the data is electronic. The “problem” is that the data is confusing and often incomplete, even in paper form. My PCP doesn’t use an EMR, and as a consequence, I have to remind her of all the meds I’m taking and what we talked about last time we were together – often a year prior. She puts notes down (the narrative), but doesn’t always get it right. And so I’m willing to bet my medical records are “wrong” too. Do patients need full access – no. Do patients need to be able to change the information in the EMR – absolutely not. But patients SHOULD be able to look at the information in an EMR and tell the doctor what is incorrect. Provided it’s not incorrect because the patient doesn’t understand medical language, then the doctor should change the information. So that the list of meds I’m on is correct in the EMR and, when used for quality purposes or drug-drug checking, can be relied upon.

  36. rbar, I can understand when writing for docs you can use doc speak, but when a patient asks you for an explaination of his diagnosis/treatment don’t you translate doc speak into patient speak? How hard is that? But who EMRs are intended for does matter. Are they for the insurance company, billing, docs, the patient? Ever got a copy of your credit report; understand it? It’s not written for consumers, it’s written for credit clerks. Just because you get a copy doesn’t mean it’ll do you any good, you’ll need to get it deciphered first. rbar, who should credit reports be written for and how should they be written? This is why EMRs are so problematic because first you need to determine who your writing for. Are all EMRs going to have to have 2 or 3 different versions – who’s going to pay for that?

  37. You make a good point that we need to remain focused on the healthcare consumers. This is the voice that is largely being left out as we look at healthcare reform and innovation. In past conversations the consumer has been wholly left out. But ultimately it is the consumer who needs to be at the center of any reform or innovation efforts. And as use of EHRs grows and consumers gain greater access to their own health information the responsibility of providers and payers to the consumer increases.

  38. The bottom line is that a great deal more can be done to make EHR & PHR data much more reliable and useful, such as:
    • Reconciliation. Just like the reconciliation of one’s checkbook and the bank statement can identify errors, reconciling the data in a provider’s EHR and the patient’s PHR is important. This can be done by the software, which would clearly revealing discrepancies.
    • Cross-validation. That is, making sure the data in EHRs & PHRs “make sense” by having the software examine data that are related, determining if the nature of the relationship is within normal ranges, and providing alerts when things are “out of whack.” For example, if a person’s signs or symptoms are not consistent with one’s diagnosis, then the related data are suspect.
    • Timeliness. If the EHR or PHR contains “old” data about one’s sign and symptoms, diagnoses, medications, procedures, inoculations, etc. have not been updated for a while, the person should be prompted by the software to review and update if necessary. This would require the establishment of rules for different types of data that are used to determine when the data had “aged” excessively.
    • Completeness. If any crucial data are missing, there’s likely to be a problem. The EHR and PHR should have rules that identify complete data sets for particular patient types based on one’s age, gender, condition, etc. The person should be notified by the software if essential data are missing.

  39. Peter, it pains me to see that this is so hard to understand even for someone as knowledgeable as you are.
    Imagine you are in a plane that is about to start.
    Scenario A: The captain talks to the passengers in aviation language, like he is communicating with the tower – maybe 2% in the cabin understand it
    Scenario B: The captain gives a very detailed explanation about a variety of factors including bad weather, the need to get the plane lighter etc., using some aviation terms; about 70% understand the whole thing.
    Scenario C: The patient just states in the usual manner that they cannot start due to bad wheather at the destination airport. About 95% understand, but the remaining 5% wonder “Why, the wheather is fine here”.
    It looks to me like many people here think that you can just tinker with the technical language, and everyone will understand … but that’s not the case because you loose the (specialty specific) meaning of certain words, and you cannot use technical terms. Moreover, due to expansion of medical knowledge combined with persisting imprecision in medicine, the medical language is particularly challenging, more so than e.g. the engineering “language”.

  40. PookieMD wrote:
    “If you were to read a technical manual on how to fix your car, would you expect it to be in ‘terms you can understand’? No you wouldn’t.”
    Actually I would, and actually they are not only written in terms I can understand (plain english – docs wouldn’t understand that) but can be used to diagnose/repair/dismantle/assemble a complete engine that you have never seen before.

  41. I am curious? Does anyone in EMR/HIT field ever consider patient narrative as “medical data”? If it were up to me, I would add “patients stories” about their illness experience into their medical charts.Because I believe narrative is making a necessary comeback in Medicine.
    And don’t kid yourselves- patients’ feelings about their illness and illness experiences can objectively affect medical outcomes.
    Also,for the techies and geeks who feel the need to measure everything,there are methods to quantify these stories into data. (although we run the risk of robbing the heart and soul out of the words)
    Dr. Rick Lippin

  42. Maybe this will help clarify the discussion in this thread: An EMR/EHR is a tool used by physicians and other health professionals, and serves up health data in a way that is needed by professionals – a well-designed EHR helps physician workflows, captures the thinking process, creates medico-legal documentation of advice given, etc. It is a “window” into a patient’s collected health data, and is presented in a useful way to physicians. By contrast, a PHR is intended as a patient portal, and should serve up an interpretation of the health data that is useful to patients – very different audience than the physician, and a well-designed PHR should offer the data in a form that is understood by lay people. Different audiences, different “windows” to the data, different ways the data is served up.
    What is problematic here is that the “data” being viewed by EHRs or PHRs is very fragmented. A cohesive “data blob” that includes all the health data around a given patient, drawn from all the different sources where that data is found (chart notes, hospital records, lab results, radiology/imaging results, prescription histories, etc) – this has been elusive. So far. My hope is that, with increased interoperability between the historically isolated places where that data is generated, there will emerge an accurate patient-centered repository of data that will give accurate information – regardless of whether it is interpreted through an EHR “physician window” or a PHR “patient window.”

  43. Agree with Pookie MD.
    Arriving at a medical diagnosis is very often a confusing undertaking and not at all standardized.
    Take “stroke”, for example. It can mean: 1) ischemic stroke (lack of blood supply) with various subtypes, 2) hemorragic stroke (bleeding into the brain), 3) SAH (bleeding next to the brain), 4) TIA (and some call that for laypeople “ministroke”) which is, dep. on the used definition, either a short embolic phenomenon or anything shorter than 24 hrs. if caused by 1 or 2. A lot of patients hear a doctor saying that they had a possible TIA/ministroke, and guess what the patient carries away: “I had a stroke”.
    Or take the confusion that patients create when they state they have “restless legs (syndrome)” (a fairly well defined movement disorder) just because they sometimes feel that their legs feel funny.
    As long as diagnostic criteria are not rigidly standardized (which is almost impossible to achieve since a specialist tends to diagnosespeak on a different level than a generalist, and patients again speak much differently), concise, clear and infallible health data in EMR format and being understandable to the patient will remain a pipe dream.
    The problem is, most medical problems are far from being well understood and well defined. We are not talking about engineering here, or other fields with crisp terminology (even though engineers and pther specilaists may have their own impenetrable language as Pookie pointed out).

  44. You want indignation? Study the largest EMR sytem in the world – the DoD’s AHLTA
    This failed megasystem is the second highest reason that DoD doctors quit their DoD jobs.
    Dr. Rick Lippin

  45. Slow down, horsie! The purpose of an EMR is to provide an electronic chart for health care workers to use. It is NOT designed as a way for a patient to educate himself on his disease, nor as a way to provide “free quality control.” Physicians use the EMR for several reasons: 1) to demonstrate a thought process 2) as a tool for decision making 3) a tool for communicating with other providers 4) a record of what is going on with the patient’s management. It is absolutely NOT intended as a record for patient use. To require that we, as physicians need to “keep data and information in terms the patient can understand” demonstrates a completely lack of understanding of what health care providers do, and how we make decisions and share information. If you were to read a technical manual on how to fix your car, would you expect it to be in ‘terms you can understand’? No you wouldn’t. This is an extremely misplaced post and demonstrates exactly what an EMR should NOT do.

  46. Excellent call to arms, David! It all starts with the vision of what we are trying to achieve, and this clearly elucidates the need for a more patient-centered approach.

  47. Thanks for this insightful commentary.
    What I keep coming back to in the EHR is the need to make the process simple, like following the Army’s KISS principle. We need electronic solutions that enable normal people to understand their own health information in an electronic format. At the same time, physicians must also be able to utilize the information, not only to care for their patients, but to educate their patients as well and to communicate to other healthcare providers.
    There won’t be a single solution that will be right for everyone, but every solution needs to keep the users and their need to understand (without the requirement of a Ph.d.) forefront.

  48. Nicely done. What the e-Patient Dave’s experience has unmasked is the inconsistent and poor data quality that exists in a very fragmented health care system. Clinical information resides in one set of buckets (each one with independent variations of the data), whereas billing information resides elsewhere and stays there (without feedback into the clinical realm, other than as administrative report cards).
    Any business process that attempts to do data validation does so with built-in accountability and audit. That means that more than one person is looking at the data, and reporting back to the other, so that mistakes can be corrected. Everything (ideally) is “out in the open.” Health data has been fragmented and hidden, historically – small wonder it is replete with inconsistencies! As we move toward greater interoperability between the systems that house health data – that is the main thrust of HITECH implementation, as I see it – there is opportunity to “get it right.” I can see active linkage of a patient’s PHR with the doctor’s EHR, so that there is two-way communication and data verification. I can see interconnected ambulatory EHRs with hospital systems, again with the goal of verifying data. I can see the emergence of a patient-centered longitudinal patient record that transcends all loci of care, filled with validated data that everyone involved in that care can use.
    Maybe I’m being a shameless technology optimist. But I think e-Patient Dave’s experience has unmasked the broken and fragmented state of health data in the byzantine health system we have historically had, and with the outrage that this has engendered, solutions will emerge.
    Robert Rowley, MD
    Chief Medical Officer
    Practice Fusion, Inc.

  49. Excellent, well written piece, David. Thanks for sharing your insights. It is important to not only meet the regulatory and privacy requirements associated with health data, but also expectations around its intended use. EMR or PHR data is just data unless it contributes to user knowledge. EHRs and PHRs don’t add value unless they improve our understanding of health status and direct us toward health improvement.
    Bill Crounse, MD

  50. After a while, I see some sanity in the EHR. I am glad to see the intent described here. We have to treat Electronic records as one system to achieve a sustainable result…EHR, PHR and all other need to merge and then a system in the integrated product need to develop the need for individual stakeholders. Once we have this vision clear, then we need good product dev process and project mgmt to achieve the desired outcome. In the IT field, the intellect to write codes are everywhere and very high quality – what has been missing is the experience in product dev process. That is why majority of IT products suffer in quality.
    Now in case of EHRs, the trial and error is not allowed due to FDA, i think, involvement. So, those who use the talent and follow a robust product development process will have an edge.
    I did a article on this few weeks back on my blog.

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