Doctors should give patients their damn data

Doctors should give patients their damn dataDoctors should give patients their damn data

An excerpt from Talking to Your Doctor: A Patient’s Guide to Communication in the Exam Room and Beyond (Rowman & Littlefield, 2013. All rights reserved.)

There are plenty of books out there to teach us how to boldly and proudly advocate for ourselves in the doctor’s office. Doctors have held the reins too long, goes the story, and ignored what patients want and need. So it’s time for patients to step up and ask for what we deserve. If there are medications prescribed, we should know how, when, and why. If there are tests to be ordered, we should have the results in hand. We should even have unfettered access to our medical records—this last expectation has a slogan attached, too: “Give me my damn data!”

Who would be so tone deaf as to deny people access to information about themselves? In the past, a patient often had to make a formal request for documents, and many offices charged patients for copying. However, with the development of new information technology and better security for electronic documents, doctors and hospitals everywhere are now becoming more open. If the “damn data” isn’t quite as open yet as all that, it’s now becoming a matter of course for patients to have access to a “health portal,” where the entire record is available at a click.

This increasing expectation that all medical information be freely available is one of those historical phenomena that gather their own momentum until they snowball along, unstoppable by anyone’s second thoughts. Nevertheless, there are two big problems with the assumption that our “damn data” will soon be widely available to anyone who wants it.

One is that the access is not as open as we would like to pretend. Not everyone is connected to the Internet day and night: only 68 million Americans are subscribed to an Internet service provider. And, of those, there might be some whose access is only intermittent, (i.e., after the kids are in bed, late at night, at work). Intermittent access does not lend itself to thorough review of health records. Others must access the Internet only in public places such as the library, where access to secure sites may be limited or restricted altogether.

What about all the millions of Americans, nearly 55 million of them, or 22 percent of the adult population, per the Pew Foundation, who don’t have any regular Internet access at all? When we talk about opening up health records, we are leaving those people out, or worse yet, deluding ourselves that they are included while leaving them dependent on Internet-connected people. And methods for providing access to health records for these “unconnected” adults are still reliant on formal requests and photocopying, which is not always offered as an option.

While the Internet is important, I don’t think it’s the be-all and end-all of communication between doctors and patients with regard to access to personal records and medical information. Like any other technology, there will be some of us who are not accustomed to using it—and thus what is supposed to be a conduit to a new age of open data might become yet another barrier to our relationship with the doctor.

Zackary Berger is a faculty member of the Johns Hopkins University School of Medicine, where he is an internist and researcher in general internal medicine.  He blogs at his self-titled site, Zackary Sholem Berger, and is the author of Talking to Your Doctor: A Patient’s Guide to Communication in the Exam Room and Beyond.

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  • Anthony D

    Seeing that you can look up a physician using his/her NPI number to find their practice and home address, you already give the public more data then they should!!

    • Zackary Sholem Berger

      Thanks for your comment. I can think of some downsides to having such physician information publicly available, but on the whole I think the benefits outweigh the disadvantages. What are your misgivings?

      • Zackary Sholem Berger

        Sorry – “Guest” above was a mistakenly repeated comment.

        • azmd

          I can think of a wide variety of reasons that I would prefer most people not to have my home address. How exactly does it benefit a patient, or anyone else who is not a personal acquaintance, to have that information about me?

          • Zackary Sholem Berger

            I take your point about the home address. NPI and practice address are a different matter, though, obviously.

          • azmd

            Oh, to be sure. I agree that information should be public.

          • Suzi Q 38

            i don’t think that patients should care about where you live. On the other hand if a person really wants that information, it is already available without a fee.
            It is called “Zabasearch.”
            Look yourselves up, and see how much info there is.

    • Zackary Sholem Berger

      Thanks for your comment. I can think of good sides and bad to the availability of such physician information, but on the whole I think the balance is to the patients’ benefit without any unsupportable burden on physicians. What are your misgivings?

    • drgh

      OMG are you serious? This is unbelievable! I am afraid to ask how this can be done.

  • Margalit Gur-Arie

    Very good points. There is also a subtle but ominous difference between giving someone their data, damn or otherwise, and unfettered access to medical records (which should be assumed at this point). Data, in this new narrative, means computable data that needs to be given, as in transferred, or downloaded, from the doctor’s computers to somewhere else. The interest groups that are creating this artificial demand have other things in mind, not necessarily patient care.
    The fact is that most folks have no desire to serve as the unpaid messenger boys for a new industry lusting for people’s personal information, so the government is effectively forcing this paradigm on both patients and doctors, on behalf of those interest groups.
    There are indeed millions of people that are not getting proper care, and in our infinite wisdom, all we do is insist that the data points documenting this misery are duly recorded and “given”. Damn, indeed…

    • Zackary Sholem Berger

      Are you saying that EMR firms are appropriating patient data for their own use? Your comment is interesting – what do you mean by “the interest groups…have other things in mind”? My take, which I hoped came across in the excerpt, is that the wish for open data is justifiable and defensible but not necessarily the key to improved outcomes.

      • Margalit Gur-Arie

        I don’t know what open data really means. I do know what open and accessible medical records are. People should be able to log into some portal and browse their chart at will, maybe print out this or that form, exchange messages with the practice, make appointments, pay bills, etc. Not to improve outcomes, but because it’s the right thing to do.
        This is not data. Data is something computers understand, something that can be transferred between machines. It has structured elements, and metadata and it makes the building blocks of big data.

        There are two types of “players” in health IT: those that already have data and those that don’t. Established EMR companies have it and non-EMR companies don’t, but want it very badly. Health data is extremely valuable (see below).
        The marketing message is that these innovators can provide services and insights that physicians and their EMRs cannot or don’t care to. The only way to get the data out of HIPAA confines and into the social web is to have patients do it for them. These are usually venture capital funded entrepreneurs and this is a pretty powerful interest group.

        As to EMR vendors, or the business associates of any covered entity, many do aggregate and sell data. This is allowed by HIPAA and is in most EMR contracts, and that’s what the newcomers want to do as well, only better….

        • drgh

          “The marketing message is that these innovators can provide services and insights that physicians and their EMRs cannot or don’t care to. The only way to get the data out of HIPAA confines and into the social web is to have patients do it for them. These are usually venture capital funded entrepreneurs and this is a pretty powerful interest group.”

          Margalit, did not quite understand-how do pts help get data out of HIPAA? It seems like holes in the actual HIPAA law allow these companies to get at the data. And with these venture capitalist gps, can you explain further how they are using the data?

          • Margalit Gur-Arie

            drgh, the large data-mining corporations that we discussed in the other thread, can and do get whatever they want to get. However, this is an expensive proposition (e.g. Walgreen’s estimated the value of their data at $800 million). In addition, the data in pharmacy systems and claims databases is very “helpful” to the health care industry, but physicians EMRs have a lot more “color” that can be extremely helpful to all sorts of other industries (and the government). HIPAA is a huge impediment to trafficking in identifiable health information, but if the patient willingly movers his/her data from a HIPAA protected EMR to some fly-by-night miracle cure app, the data becomes liquid and can travel to all sorts of other destinations.
            To facilitate this, meaningful use stage 2 requires that all EMRs provide means for patients to transfer data out, and as a first step, it requires that a small percentage of patients access this functionality, although it stops short of demanding that transfer actually occurs (it will come…). So basically, if you want MU incentives, you must expose your patients to this functionality.
            The official message is that the data will be used for research, transparency and all sorts of good stuff, and some of it may end up being used for that, but the enormous profit potentials are indicative that it will also be used to extract some more money from consumers, while better selling them things they don’t need and things that are harmful, like more garbage food, plastic junk and mind-numbing technology.

          • drgh

            “if the patient willingly moves his/her data from a HIPAA protected EMR to some fly-by-night miracle cure app, the data becomes liquid and can travel to all sorts of other destinations.”

            Sorry if I am dense but what is an example of a fly by night miracle cure app Margalit?

          • Close Call

            Pick any crappy health app in the itunes app store.

          • Margalit Gur-Arie

            What Close Call said :-)

    • drgh

      beautifully put. i hope you write another article on this. To be honest i wish the public understood this! It might make a difference. But right now even most doctors are unaware I would guess.

  • Observer

    Not sure where you picked up the internet penetration stat in this article, but it’s either quite off or missing a bunch of asterisks (could it be the stat for households with broadband rather than people?) The smartphone – based penetration rate alone is much higher than that in the US (see ) and although some of those users won’t have a data plan, free wifi is readily available.

    In terms of a sharing patient data of course a paper-based solution will need to remain available, but it’s going to be a very rare scenario where a patient isn’t better served by internet-based records for cost, convenience and accessibility.

  • Danielle Orr

    As a RN, and a Manager for over 25 years, I welcome this article. We
    review our surveys weekly as a group with our CNO. The number one dis
    satisfier is “communication with your doctor”. I
    see physicians fly into a room and fly out. The patients are clueless. They are
    scared out of their mind and have no idea of what is really going on. We have to
    try to be there when a doc walks in and talks to the patient. If they stay five
    minutes I am happy and I can translate to them what they explained in a hurry.
    Come on people, if you think you are too busy to talk to your patients and
    explain what is happening to them, than think again. It is not an option. The
    physicians who are “loved” by the patients are the one’s who take a few minutes,
    sit down and talk to their patients making them feel as if they are the only one
    in the room. A little touch on the arm and you have won the jackpot. Are you in
    because you wanted to save the world or are you in because monies is now an
    issues and you must run fast ? Think again because one day you will not have to
    run because your patients will be leaving you one by one for someone who
    demonstrate that they care. It is not difficult, but you must do it if you want
    to survive and we want you to survive but we are not you and we cannot replace
    you. You give us the care of your patients 23 hrs and 55 minutes of the day, the
    rest is up to you.

    There is
    nothing stronger in the world than gentleness.

    • Zackary Sholem Berger

      Agreed! Thank you.

  • Observer

    I don’t quite understand the author’s caveat here. If in your practice, a patient wants paper records and requests them, provide them. If a patient prefers access to an e-portal, give them access (and put some real data there!). What’s wrong with that? Okay, not everyone’s online yet, but there’s no going back to file cabinets, so . . . what’s the worry? I’m most confused by the ominous tone of the last sentence. Perhaps it makes sense in the longer context (this is an excerpt), but the source of the author’s anxiety (that patients have the damn data? or that not everyone’s online?) is very unclear.

    • Zackary Sholem Berger

      Thanks for your comment – happy to clarify. Whenever there’s a big transformation, like the paper to EMR switch, there are often two assumptions. (a) Everyone will make the switch without a problem. (b) The switch will improve everything that was a problem before. I don’t know whether you share both these assumptions, but certainly a lot of people do.

      For example, “not everyone’s online yet,” people – like you – say. True, more and more people will get on line, and perhaps more than 20% of our patients at my institution will eventually activate their MyChart link in EPIC. The fact remains, though, that the patients least prepared to connect to their electronic records are also the ones left behind by the health care system for other reasons. EMR is not the vehicle to bring them along, we need a mutli-pronged effort (and, indeed, people have claimed that EMRs will do just that).

      Neither can we assume that the problems that have been plaguing our health care system for some time will somehow be improved through EMRs. They have not been shown, by and large, to reduce costs, improve care, or improve patient satisfaction. In fact, EMRs can get in the way of effective patient-doctor communication.

      I am not saying go back to file cabinets. I am saying this: as we implement EMRs, we need to try to fix the problems that will come along with them: disparities, inequities, poor communication, and lack of patient-centeredness. EMRs are not the panacea for those.

  • usvietnamvet

    You’ll have problems if the people don’t understand what they are reading. Just look at our former vice presidential candidate (Sarah Palin) who was insulted that the doctor said she had a spontaneous abortion. This is a woman with a college education who should have known that spontaneous abortion was simply another name for a miscarriage. Now think about all the uneducated people.

    • Guest

      “Just look at our former vice presidential candidate (Sarah Palin) who was insulted that the doctor said she had a spontaneous abortion.”


      That is incorrect, just another Leftist myth. She was upset because she had to have a D&C after a miscarriage, and was originally billed for this D&C as an “abortion”. It’s in her book.

      She really isn’t as stupid as you all seem to need to believe she is.

      • usvietnamvet

        Actually it was on her blog. And it has nothing to do with intelligence…many intelligent people simply don’t know the language of other professions. BTW I’m not either a conservative or a progressive. I’m a libertarian. Totally different animal.

  • Danielle Orr

    You would be surprised at how many well educated people do not understand
    most of the medical jargon. It is a language all by itself and who knows what
    Palin thought when the word spontaneous was said to her? Now believe me, I never
    thought of her as an intelligent woman (getting a degree does not necessarily
    mean that you are intelligent, it is supposed to help you with critical thinking
    however, it does not happen all the time. We had presidents with so call
    education who could not pronounce a word correctly or would miss-use words.
    Palin does not even have that on her side (Strictly my personal opinion) however
    patients need very simple words, easy communication 5 or 6th grade level.
    Remember hospitalized people regress, they are scared and if you start talking
    fast, using words they are not familiar with and you may also have an accent or
    they may not speak English well, an interpreter is sometimes needed to protect
    yourself most of all and to validate that the patient understanding of what you
    are trying to communicate is correct.

    • usvietnamvet

      I do understand how many well educated people do not know the jargon. But if you’re chronically ill it helps to learn the jargon. I’m not an expert but can usually hold my own when speaking with health professionals and sometimes know more then they about certain areas.

      Palin apparently had looked at her records and as a anti-choice supporter was insulted by the word abortion. I too do not believe she is especially smart but many do.

      Sadly I think due to the insurance companies influence most doctors do not have the time to talk with their patients. I’m lucky because as a veteran I get pretty good care (except for pain treatment). I have a good doctor who is willing to put up with me (I can be a real pain in the butt). She supported my not talking Lipitor when it was prescribed by a heart specialist. It’s a shame that the entire nation doesn’t have access to the VAMC system. I think you’re simply a good doctor who tries to do his job correctly.

      • Guest

        She was upset that a D&C she had to have after a miscarriage was billed and labeled as an “abortion”.

        Why do you people still feel the need to lie about her? Is she that much of a threat, still?

        • usvietnamvet

          It came from her own blog. I could care less about Palin. Not someone I’d vote for as a libertarian but there are many (both conservatives and progressives) who I did not vote for.

  • Zackary Sholem Berger

    Relevant to this piece, take a look at this article about the “subtle, adverse effects of electronic medical records”:

  • Noni

    When you post a link to anything your post gets hung up in moderation. Just FYI

  • Guest

    “What about all the millions of Americans, nearly 55 million of them, or
    22 percent of the adult population, per the Pew Foundation, who don’t
    have any regular Internet access at all?”


    My goodness, what year was that study from?

    Pew’s most recent study (go to pewinternet-dot-org) shows that 85% of American adults are internet users. And it doesn’t say that the reason the other 15% aren’t internet users is because they don’t HAVE access. They just don’t USE the internet.

    My Mom & Dad have internet access in their home, but my Dad doesn’t really use it – my Mom’s the big ‘net junkie. So he’s not an internet USER, but he certainly has ACCESS.

    I don’t know what proportion of the 15% of American adults who aren’t active internet users are only that way because they don’t have ACCESS to the internet in any way, shape or form; and how many aren’t internet users (even though they COULD be if they WANTED to be) just because it’s not something that interests them.

    But your claim that 22% of American adults “don’t have any regular Internet access at all” is just not right.

  • usvietnamvet

    It worries me that my data can be accessed and there is no real security. The vet admin lost my info twice (due to idiots not following the rules) and the state of Colorado has lost it once. So I simply don’t trust that my info is safe.

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