Why there needs to be a national healthcare information database

The majority of Americans have a great deal of personal health information in their physician’s medical record. Many of these physicians have an electronic healthcare record (EHR) to store this information.

Unless you are in an integrated healthcare system, and most Americans are not, this information is just not available to you or any physician seeing you who does not belong to the same physician group as your primary physician. Even your primary physician often will not have the latest information from your specialist physician or hospital. God forbid that you travel and need healthcare far from home.

It was proposed by Eric Schmidt CEO of Google last summer that we need a national data base to collect, store, and make available our health records to any physician we choose to let see them. To me, this seems just too obvious. Tremendous amounts of duplicate testing, and testing and testing done only because lack of availability of other information, is ordered by physicians doing their best to provide timely and quality care.

I do not know if this should be a government owned and operated data base, or a single privately managed and publicly funded data base. This is really not the issue. The real question is why is there not an overwhelming cry for a system like this. First is fear of “big brother” and misuse of the information. Will the information confidential enough? Could the system be hacked by cybercriminals or just vandals?

We just need to get over this concern. The benefits are just too big, and these concerns overblown. We just cannot afford not to have a system like this is place, both financially and to improve care. Would it be helpful to your ER doctor when you show up unconscious in a far away ER after a car wreck to easily access your medication list, allergy list, and list of diagnoses? Would it be helpful for her to know your last blood count to see if your borderline low count now is new, or preexisting? Of course it would.

A second concern is of course the cost of operating such a system. A critical evaluation of the cost and savings of such a system is needed, but I am confident it would much more than pay for itself. It would be one interface for all EHRs to work with. It would allow physicians to provide quality care, with current information about your prior tests and selected exam results, without having to order repeat or additional testing.

Another benefit to this type of system is that the NIH or other appropriate system would have access to a gigantic database to look at the health of Americans, allowing them to more appropriately target key areas for more research, intervention, and care.

Key elements needed in this system include:

· One system for all. Having multiple competing systems will fragment the information, and lose many of the needed benefits.

· Be federally funded, so that every American will be able to have their medical information included and appropriately available everywhere.

Edward Pullen is a family physician who blogs at DrPullen.com A medical blog for the informed patient.

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  • Tom

    When confronted with a hot mess like this, one wonders where to begin…

    “First is fear of “big brother” and misuse of the information. Will the information confidential enough? Could the system be hacked by cybercriminals or just vandals?
    We just need to get over this concern.”
    Well, no. This is an important and valid concern. Dismissing it is arrogant and stupid. Further, it’s a convenient dodge to obscure the issue that medical data is already poorly secured, and would likely get worse with a centralized database. Most leaks of data are the result of social engineering, not cybercriminals (look up the term, if you must). Centralized access means more people to manipulate to access the data for you.
    Medical information is some of the most private information that people ever share, and would likely affect them more deeply than, say, the sharing of their financial information. It does need to be addressed, if for no other reason than to persuade people that their privacy is important to the controller of data.

    “I am confident it would much more than pay for itself”
    Um, ok. Based on the track record of EHRs paying for themselves, I have issues with your confidence.

    ” NIH or other appropriate system would have access to a gigantic database to look at the health of Americans”
    Seems like this would be a potential invasion of privacy. Which I thought was secured by HIPAA. Could be wrong though.

    “One system for all”
    So you want to stifle any innovation, despite ample evidence that EHRs desperately need to get better. Any time there is a monopoly on production, one is left with a product that does not evolve, because it doesn’t have to. Competion is the lifeblood of innovation, and you don’t want any.

    “Be federally funded”
    This, I don’t understand. Why must it be federally funded, if its benefits are so compelling? Perhaps the problem is that it isn’t a good buy for doctors or patients, so it hasn’t been adopted. The fix that you need here is to get a better product that does offer compelling benefits, such as usability, profit generation, and productivity gains. The feds aren’t about that, they’re about control. If I want an EHR, I want it on my terms, not on the governments terms.

  • SarahW

    If I travel I can bring relevant medical history with me.

  • SarahW

    I don’t think you understand the privacy and control implications for some national database. Perhaps to avoid it the patient might be hub of their own records. Physicians have their own individual records, but the patient keeps a hub device to keep the full collection. You might gain access to the patient’s records with a reader when granted permission.

  • Jay

    How is what you are proposing different from the national health information network and the various state/regional efforts underway today? I am not an expert, but believe centralized approaches have been tried and failed over the last 2 decades. Instead, the federated architecture in the current incarnation of connectivity initiatives seems more realistic for a variety of reasons. I’m sure Google would just love to have access to everyone’s health data (part of why their PHR initiative may have not gained too much traction), though…

  • http://gmail.com Bob

    Having a “system” is somewhat overemphasized in that we have many more systems thane we need. Factually we have all the data for those who have been treated in the past several decades for most of the population; it just isn’t very retrievable.

    Most of the population have stayed in the same general geographical location and have used the same Docs, hospitals and testing facilities, and the jargon and claims processing have been computerized for years. The biggest data banks are the Government ones and none of them are able to be “standardized into a single system”.

    And so if all these records are somehow brought to single data base form, will the attending physicians take them as being something other than historical markers and the tests as all being correct? As for the patients there are large barriers in place for them for few would understand their own records since few “read medicalize” the real purpose of this exercise is exactly what?

    Computerizing existing records in physician’s offices and matching this with the data available from hospitals and insurers would more quickly get to usable medical data and would replace the current system that is mainly paper duplication in these offices. The number of people replaced would be extremely large savings until the cost of unemployment in the record keeping functions is calculated in.

  • Fray

    “We just need to get over this concern. The benefits are just too big, and these concerns overblown.”

    You’re fired from you job, denied health care, etc…is not a concern. When you get in that accident, there won’t be any medical records because you can’t afford to go to the doctor.

  • BladeDoc

    Which concern is overblown? Do you not believe that the government would lose this data? If that is the case I can think of multiple episodes of loss of personal information both in the public and private sector. Identity theft is rising exponentially as a problem (see GAO report For examples of government data loss see VA data loss or how about in the British NHS Unlike if someone in my office did something like this, in none of these instances was anybody held personally responsible. In none of these instances could the patients sue for damages or HIPAA recompense ($50K per incident I believe).

    If you mean that you personally don’t care if your medical information is disseminated to the public then good for you. That’s a decision each person should make for themselves. As far as I’m concerned, I would prefer to risk the marginal possibility for improvement in my medical care for the possibility of my medical records being public knowledge.

  • kullervo

    You left out a big fear: if my lifetime medical records were all available, I would be uninsurable.

  • Emma B

    The problem with a single global database of this sort is that it contains a great deal of information which is not necessarily relevant to the medical problem at hand, some of which is potentially quite sensitive. For example, I might not necessarily want my orthopedic surgeon (or more specifically, the nurse in his office who is a casual acquaintance of mine) to know that I went through infertility treatment. I might also not want anyone to know that I had an eating disorder as a teenager, or to be aware of hypothetical STDs, abortions, or psychiatric diagnoses. However, any doctor who could access my medication list and previous bloodwork would also be necessarily aware of such conditions, even though it would rarely if ever be relevant in your car-wreck scenario.

    Even Google has not managed to satisfactorily solve the granularity problem inherent with sensitive health information, because it’s a behavioral problem rather than a technical one. The vast, vast majority of users will not adjust their privacy settings or manage their information in any way, so the default settings you choose for any new piece of data will govern the system’s behavior, and you will always be trading privacy for clinical usefulness. When a piece of data (say, bloodwork results) enters the system, it has to be defaulted to public or private access. If it’s public, most users won’t choose to make it private, and the ER doc knows that you’re being treated for infertility. If it’s private, the ER doctor won’t know that you’re newly pregnant with multiples. Which one would you prefer?

    As someone who actually has some potentially-sensitive health information in my background, I’m willing to accept the car-wreck scenario rather than have my orthopod’s nurse know about my pregnancy history.

  • Robby

    How in god’s name can our personal, medical information being misused be overblown?

    It is one of the most personal, private peaces of information we have….

    And us being concerned about its privacy is something we need to just get over?

    What part of that do you actually think will fly with anyone in the country besides yourself and your friends?

  • Kelly

    I agree with Dr. Pullen. I also understand the concerns of those who posted comments. What we need is a common sense compromise. The privacy issues, both legal and fear-based, can be alleviated if we use the data without linking it to the individual’s I.D. Of course, this isn’t exactly what we want, but in the meantime, there are many advantages to using data without the identity of the patient. The persons gender and age, diagnosis, procedure codes, frequency of visits combined with some basic algorithms, provides a wealth of information. All of this is available in standard claims data. We need to merge the pharmacy data and the lab results. We have the technology to do this. As a health information analyst for more than 20 years, I have always wondered why the insurance companies don’t use the data to study outcomes, etc. If you assume they do, you’re wrong. The details are in the data that we are not using- we need to move beyond this nonsense and utilize the technology and brain power we have available to us, rather than continuing to stumble, bicker and argue. I recently did some analysis on pharmacy data, specifically mental health drugs. Over 75% of those who had filled prescriptions for anti-depressants or other mental health diagnoses, did not have any E/M claims for consultations or visits to mental health providers.
    And consider this: pre-diabetes, borderline hypertension could be addressed before they deteriorate to full blown diabetes and high blood pressure (or worse), if we had a system in place that was intended to be ‘meaningful’. As it stands now, the insurance companies have all of the data, the doctors have the medical records (that contain the lab results). The disparity between information, systems, payers and other third party entities is the problem and we need to fix it.

  • http://fertilityfile.com IVF-MD

    In my field, all patients are with me temporarily and eventually go on to a general OB when they get pregnant. Not only do I encourage patients to keep a summary of their record which I am more than glad to provide them, I try to EXPLAIN to patients as much as they care to know about their condition, so they can understand and have a better conversation with their next doctor. (Yes, I know that some patients don’t want to try and understand their condition, but most do, and many want to know it in great detail).

    Why does an unreliable third party have to be involved? If I give my patient a folder with their labs and their sequence of events, they can take that with them when the travel. I have patients who do treatment and then travel to Europe while pregnant. They will meticulously carry with them all their info.

    Anyway, when the patient has the information, it is safely in their hands. No prying eyes of a low level government worker can see it. This is especially desired if the patient themselves works in the hospital. If you think the government should be 100% trusted to not allow nosy insiders to invade your privacy, you might want to think again.

  • http://www.cedarhillpt.com Paul Weiss

    I for one think the basic premise is a great idea. It is truly unfortunate that some people are in a circumstance whereby their complete medical history could be held against them/make them un-insurable. Perhaps it is better to say that our current system is unfortunate because such a problem could arise. I believe that Taiwan has a system where people are given magnetic stripe cards with a microchip. The chip contains their medical records, and people keep their cards. The card is given to a health care provider to review their history and update it accordingly.

    It is not something that has to be mandated for the masses. If people want to opt in, let them, and if people choose not to they can have that choice.

  • http://drpullen.com Edward Pullen MD

    -Tom. We just disagree on the issue of confidentiality. I think this could be overcome, you I guess do not. It sounds like you are not alone in comments on fear of misuse or loss of the database information.
    -One system for all simply applies to the data base, not to EMRs. All EMRs would simply have one place to interface with, not to all try to interface with each other or multiple places.
    -HIPPA concern, the information could be used in an extracted, deidentified way, this is done in lots of systems already for research.
    -The issues Emma B brings up are more challenging. I would not suggest that all parts of a medical record be in the database. If it excluded information on STDs, pregnacy information, possibly some mental health information, it could still be extremenly helpful.
    -The issue of insurability is a huge problem of its own, and it impact on many Americans is immense. It needs a solution, a database or not.