A plea for a universal, unified EMR

At some point, this gets to be ridiculous. Online, I can buy any item from anywhere at any price, pay any bill, watch any movie, listen to any song, order dinner, schedule car repair or read about any subject on Wikipedia.  I can determine the weather in Rio, sport scores of Barcelona, Parisian traffic or by GPS the location of my kids, just down the block.

However, I absolutely cannot learn anything at all of the health history of the flesh and blood cancer patient sitting right in front of me.

Today, I am seeing long-term patient, Thomas R.  Father of three and a really nice guy, Tom is a medical challenge.  He is immunocompromised and status post 20 years of complex chemotherapy, radiotherapy, a bone marrow transplant and several bizarre complications, we barely understand.  In the last two months, since his last visit with me, he has seen an internist, a dermatologist, a podiatrist, a neurologist, a dentist and an infectious disease specialist.  These doctors ordered X-rays, lab tests, blood cultures, an EMG, a skin biopsy and several new medicines.   These are confusing tests resulting in confusing diagnoses with confusing therapy in a confusing patient. What records do I have of all this new complexity? Nada. None.  Moreover, based on our files, all these other physicians have none of ours.

Yesterday I saw Ellen T.   This highly intelligent woman was previously in excellent health, but two years ago she suffered devastating hematological complications of routine surgery.  She presently takes 21 different medicines from a laundry list of specialists, including several surgeons, kidney specialist, physiatrist, rheumatology, gastroenterology, cardiology and endocrinology.  On January 1, 2013, two things went wrong.  First, her blood sugars skyrocketed dangerously and remain over 300.  Second, she changed her health insurance and most of her doctors do not participate in the new plan.  She needs to immediately transfer her records and establish a new care team. Do we have a copy of all this information from all these locations?  Not at all.

Bob M. dropped by the office to get a lab test after four months of chemotherapy.  A tooth is causing pain, and it needs to come out.  His dentist sent a note asking whether Bob should stop taking his blood thinner.   Our records have no mention of any blood thinner.  Bob never told us, because his primary care doctor has been prescribing and adjusting that unstable medication.  We shudder at the thought of how the blood thinner interacted with the chemo.

Would you go to a bank that required you to carry a paper ledger of all your deposited money if you moved from one branch to another?  Would you fly a commercial airline whose arrival at its destination airport was always a surprise?  Shop at a supermarket with unlabeled aisles, food piled in bins, and secret prices that had to be looked up, one item as a time, when you checked out?  We continue to tolerate a health care system where our personal information is kept locked in unconnected, non-communicating silos, so that every time we see a new practitioner we have to start again and the only thing that protects us from disaster is our own memory of our medical past.  The result is duplication, error and instead of treating each patient based on their health history, doctors must guess about the best care, without knowing its possible impact.

Our entire medical histories, drug lists, allergies and complaints should be securely stored in an accessible common file much like Facebook, bank accounts or Amazon. Each of these maintains a master file on us, which can serve as a model.  With our permission, doctors, pharmacists, nurses, podiatrists, chiropractors, hospitals and even nursing homes, should have easy, secure, on-line access.  When you see a new caregiver, they should open this master file to understand who you are and, critically, record new diagnoses and treatments in that common electronic vault.  A unified, universal electronic medical record (EMR) should be the foundation of health prevention and therapy, and not be some holy grail we never seem to reach.

There remain significant hurdles to reach this critical goal. We must push the techies to solve the obstacles to full universal EMR implementation, which include the challenge of data input, the rules for internal organization (what does the e-chart look like?), a national backbone and vital security.  We must insist that health providers fully commit to this core project. Finally, we must allocate needed dollars to build this vital part of our infrastructure.

Will a universal EMR save dollars?  Not right away, but in the near future, absolutely.  Will it improve the safety, quality and efficiency of medical care and thereby save lives.  Definitely.  Is there any reason to maintain our system of primitive individual medical isolation?   None at all, continued delay would be ridiculous.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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  • buzzkillerjsmith

    Is there any reason to maintain our primitive medical isolation? Of course there is. It’s called “corporate profits.”

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    There are no techie hurdles to a universal medical record, but every time I start talking about it ( http://onhealthtech.blogspot.com/2012/01/arguments-for-universal-health-record.html ), I am told that this is politically impossible (politically today means corporately).

    We are spending a fortune one health IT and most of the money goes to health systems with commercial needs to protect market share, and IT vendors with products built to service these customers. Changing paradigms will drive lots of these folks out of business and they sure as hell not going to commit voluntary suicide and unfortunately our government is largely just an extension of private interests at this point.

    In all the examples in the post above, there is none where competing corporations are shown to cooperate for the greater good. You don’t need a ledger to go to another bank branch, but your ledger will not even be looked at if you go to a different bank altogether.
    Health care should be different than all those examples we love to use.

    I

    • ninguem

      Can you name a country anywhere in the world that has a universal EHR?

      • http://onhealthtech.blogspot.com Margalit Gur-Arie

        Well, it depends on you mean by EHR. France has a nice system that is accessible to all and holds basic information, not rims of convoluted notes.
        Actually, if you think about it, we have a system that will let you see medications history for any insured patient, and all States have immunizations registries, and some States have other registries as well.

        It’s really not that difficult (technically) to have a minimum authoritative data set centrally stored for all patients.

        We are not talking about a universal software application like the UK tried to enforce. Just a simple database with meds, diagnoses, immunizations, and maybe labs.

        • ninguem

          Fine with me.

          That’s not what the OP here is asking for. The “pundits” on both sides of the aisle……”Obamacare”, to Newt Gingrich, are all calling for EHR’s with all the “convoluted notes”. No one is asking for a simple database.

          I had a nice, simple EHR that worked just fine for my solo practice. They added all the bells and whistles mandated by “meaningful use”, that wveryone is calling “meaningless use” for good reason.

          They ruined the software, it’s buggy as hell, now it crashes on me constantly, and they tripled the price.

          My sister runs a law firm, as a manager, she’s not a lawyer. She gets electronic LEGAL records for the lawyers, at a fraction of the cost of my electronic MEDICAL record.

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            I totally agree. Going back to basics and quit trying to boil all the oceans all at once may be what we need to do, if any of these pipe dreams will ever amount to anything other than wasted taxpayer money.

          • http://twitter.com/shihjay2 Michael Chen, MD

            I had the same experience too with my practice. Along came Meaningful Use and what was a simple, streamlined process became obtuse, unusable, complicated, and costly. I felt like the MU moving train was going nowhere but fall off a cliff sooner or later and I didn’t want to jump on the bandwagon at my own peril. Although the odds are certainly against independent doctors and deliberately non-certified EMRs, it’s about the only chance we have now. Hence my campaign for open source project and other open source solutions meant for direct doctor input and design.

          • Judgeforyourself37

            Institute a Medicare for All system of health care, it is cheaper to operate than the corporate raiding insurance companies and then ask the French how they implemented their system of EMR. It works well there. OH, I forgot, the political Congress does not believe that we can learn anything from other nations.

  • http://www.facebook.com/joyce.coutu Joyce Coutu

    Health Information Exchanges (HIEs) are solving this problem. In RI, for patients who consent, we are connecting different EHRs, labs, medications and other data into one repository that providers can access. So, if a consulting physician orders a lab, those results can be seen by the primary care physician and the patient’s other providers. Other states are also building and using HIEs. In the future, HIEs will also be connected and so data will follow patients across states and regions.

    Standards that make interoperability possible. There’s plenty of work to do, but progress has been made and more will follow.

  • http://www.facebook.com/shirie.leng Shirie Leng

    Yes. Couldn’t have said it better myself. But in order to have universal EHR you have to do a Manhattan Project. You gotta get everyone in a room to agree on what that EHR looks like and then make one, then release it to everyone. That won’t happen without universal health care and government funding. It also won’t happen as long as private IT companies are making our systems.

    • ninguem

      There are lots of countries that have universal healthcare, and not one of them has a universal EHR.

      And more to the point, the British tried to create a universal EHR, and it failed miserably, and at great expense.

      • Anon

        Australia, too. They have a robust, well-funded and popular universal healthcare system, and fewer citizens than the state of Texas, and they haven’t got there yet either.

  • http://twitter.com/shihjay2 Michael Chen, MD

    There is a lot I can say about this topic but I’ll start with some core thoughts.  First, we should be talking about true interoperability between system (such as a health information exchange) as a means to get universal EMR functionality.  We need an EMR that is usable to doctors so that we can input good quality data (intuitive interface and natural language processing).  Nothing like this exists in practice but the technology is already within reach.  We are limited only by the laws (HITECH ACT, Meaningful Use) that artifically and arbitraily handicap the full potential for this dream that Dr. Salwitz describes.  Free market forces alone will only hamper our efforts to get there since currently insurance billing and large vendor EMRs are in control of the features with little regard for what is important in respect for the doctor and patient.   The only solution now is that doctors need to take back the reigns of control and we must create an alternative and subvert the existing system to make our demands heard.  An open source EHR (like NOSH ChartingSystem) coupled with an open source standards based continuity of care record (like BlueButton http://bluebuttondata.org/advocate.php) and a community of doctors who generate and support open interoperability standards (like the Cure Project http://www.thecureproject.org/home.html) is where we can realize this dream.  It is within our reach only if we unite and create our own destinies in Health IT, nationally and worldwide.  Start the planning and dream making at http://noshemr.wordpress.com.

  • BenoitEssiambre

    Proprietary systems are not very good to solve this problem because of two reasons:

    First, everybody using the same system, when the system is proprietary is a huge cost risk and quality risk. It gives a monopoly on medical records to a single company. Only their software can fully access and manipulate the records. Once all the records are in their format, users have basically no leverage in negotiating price for continued access to the records because converting and migrating records to a new system would mean huge software development and training costs. EMR companies don’t have to spend on improving and fixing the system once their clients are stuck in it. When EMR companies sell a system, it’s usually in the hope users will be locked in for a long time.

    Second, there are people who think we should predefine and standardize record formats so that companies can provide software based on these formats. As a software guy I can tell you that this is quite impossible, especially across different competing EHR companies.
    Most of the innovations and improvements in software come with changes in storage formats. In a typical application, storage architecture can vary across thousands of different aspects depending on how you encapsulate data, design security, design communication, display data or link data together. A storage format in a software being worked on evolves and changes on an almost daily basis, often in subtle ways that would trip any other company’s software if they tried to read the files or database. Also, stopping the format from changing would mean stopping the software from improving or being maintained properly.

    On top of that, EHR companies have zero incentives to keep other companies in the loop and help them be compatible. This would simply be helping their competitors.

    There is only one solution to the problem in my opinion and it is to use open source software at least for the core of EMRs. Open source contracts basically say that when a company sell its software, they have to make the code to build it public. A lot of software is open source including the core components of popular web browsers, Android smartphones, most of the internet’s infrastructure, most server code and website frameworks. It is the best model for core infrastructure when different companies have to cooperate and be compatible with each other.

    It doesn’t mean all your software has to be open source. You can easily integrate proprietary add-ons such as dictation software or mobile interfaces. But even these add-ons can be better integrated when their maker can read the code of the core software they connect to.

  • southerndoc1

    It’s very easy to get the information you need using paper and a well-trained staff. Your employees are lousy: fire them all.

    • http://blog.unclenate.com/ Uncle Nate

      Pretty much a bullshit response; yeah, you can staff up and pay people to do act as mechanical turks. On the converse, the healthcare and HIT industries can collaborate, develop and adopt workable standards for data and interoperability in earnest and move forward. They continue to circle the wagons around digital identity and transactions (CommonWell, anyone?) to insure protection of their ability to extract exorbitant profits. It’s unfortunate that the HIT industry machine is largely snowing everyone with their own tales of woe, just to continue sapping bucks from the system, and the taxpayers for that matter.

      • southerndoc1

        “you can staff up and pay people to do act as mechanical turks”

        Staff up? We run on 1.6 employees per physicians, with all billing done in house. How many could I fire if we switched to EMRs?

        “the healthcare and HIT industries can collaborate, develop and adopt workable standards for data and interoperability in earnest and move forward”
        You want to give us an ETA on that one?

    • http://www.mightycasey.com/ MightyCasey

      Paper records are of NO help to a patient seeking ready access to his/her own data. Also, how will that help a patient navigating a complex DX through many sites? Who’s to know if all the paper is present? Who’s minding the traffic? What if the fax machine runs out of paper two sheets short, and no one notices until that patient has been given a drug they’re allergic to b/c that information was on the last page that’s stuck in the machine?

      • southerndoc1

        My point was that in any well-run office, Dr. Salwitz would have all the information he needed on these patients available for review before he stepped into the room with the patient. These records could have been obtained by EMR, paper, smoke signals, or mental telepathy. The problem is, as he describes it, his staff is not doing their jobs (probably because they expect the EMRs to do it all).

        “Paper records are of NO help to a patient seeking ready access to his/her own data”
        If it’s life threatening information, the MD calls the patient and gives the patient a copy of the report. If there’s no urgency, the MD copies the report and mails it to the patient. Electronic data is no more useful or valuable than paper data: it’s all about having systems that work and sticking to them.

        • http://www.mightycasey.com/ MightyCasey

          Doc, healthcare is not one office, which is why your paper parade don’t pass muster.

          Data related to my care should be not be judged solely by someone else (i.e. “not me”) as to life threatening or not. My knowledge of my own corpus trumps that of any doc, I prefer to act as a participant rather than a meat puppet when interacting with the medical industry. I see the data produced from my care as my property, as well as the property of the doc/facility/whatever that delivered that care.

          • southerndoc1

            “What records do I have of all this new complexity? Nada. None. Moreover, based on our files, all these other physicians have none of ours.”

            “Our records have no mention of any blood thinner. Bob never told us.”

            This office is not being run up to standard of care. I can promise you that my paper-based office does a LOT better job of getting info going where it needs to go than this office that has been EMR-based for years (probably because everyone is so distracted and worn out by using a really lousy EMR). Take your choice.

  • http://euonymous.wordpress.com euonymous

    Actually, a standardized EMR will indeed start saving money for the healthcare system as a whole right away. But the only way there will be standardization is if somebody develops a really good template and then offers it FOR FREE for the use of everybody. The financial advantages to having a proprietary system are obvious to everybody from razor blade producers to software companies. The value of something like an internet or pdf or jpg standard is huge, but must be economically motivated through development by (or with funding by) the federal government or through a clever business model. So far nobody has come up with an EMR standard that motivates adoption by the entire healthcare system. The Veterans Administration version might be a place to start.

  • sarah93

    You’re assuming these EMRs are going to be accurate, with no wrong diagnoses to haunt a patient for years. Until that happens, I’ll stick with maintaining my own records and sharing them as needed.

  • Judgeforyourself37

    France has such a system and each patient has a card the size of a credit card that each doctor can access, via her/his computer, to learn the patient’s medications and comorbities. After seeing the patient the physcian updates the card, and be so doing he can gain payment from the gov’t for the time he spent with the patient and the tests that he/she found necessary to have been performed. The card is then handed back to the patient with a complete picture of his/her medical history.

  • betsynicoletti

    It is the dirty little secret of EMR. Transferring care? You need a printout from your previous practice to take to your new practice. The new practice can scan it in as a flat document, making it nearly impossible to search, or spend significant resources to scan each document separately. I have never seen that done. Those of us who work in healthcare know better: get only the records you need printed to take to your new physician.

    The situations you describe are unconscionable.

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