In it’s broadest definition, a portal is a doorway from one place to another.  On the internet, a portal is a site that has links to other sites.  In health care IT, the term refers to a feature of an electronic medical record that gives patients the ability to see parts of their medical record.

In each of these definitions there are two important things that are consistent:

1. To access what’s on the other side, a person must find the portal.

2. What is on the other side of the portal is not controlled by the person using it.

This is very important in the area of my concern: health care IT.  Our old friend “Meaningful Use” includes the requirement that the EMR system must “Provide patients the ability to view online, download, and transmit their health information.”

In case you’ve forgotten (deliberately or not), “Meaningful Use” is a program to encourage use of EMR by doctors, paying them real cash money if they meet the prescribed requirements.  The main way EMR vendors accomplish this provision is through the use of a “patient portal.”

So are portals the answer to patient engagement via online tools?  Are they the answer to e-Patient Dave’s demand to “Gimme My Damn Data?” I don’t think so.  They may be a step in the right direction, giving people some of the information they need, but there is still a wide gulf between giving someone a cup of water and ending a drought.

The Problem with Portals

The problem with portals is that they are too narrow.  First, the person must have access to the portal to get what’s behind it.  Physicians need to give permission for patients to view the information they send to them.  But people often have more than one doctor, and not all doctors are on the same record system, which means that the patient has information available behind multiple portals (with the complications that implies).

The second problem is that what is behind the portal is determined by the clinician (or hospital) and the EMR system itself.  Patients have access to what they are “permitted” to access, not necessarily what they need. Some physicians (like me) send pretty much every test result I get on a patient, while others abide by the “no news is good news” rule, sending patients only “bad” results.  Some results are sent as summaries, like: “your chest x-ray was normal” (instead of the actual x-ray report with the typical radiologist’s vague “can not rule out” litany), or “your labs all looked good” (sent this way to avoid having to explain to patients that their low BUN is not a bad thing).

Some of the limitations are put there by the EMR vendor.  I would love for my patients to see a flowsheet of their lab data over the years, but the EMR products I’ve used limit the view to the equivalent of an email document, not a flowsheet of discreet data points.

Why is this all important?  A more basic question must first be answered:

Why do patients need their data?

There is a wide range of answers people will give to this question, depending on the philosophy of “patient engagement.”

  1. To meet requirements – The old-school of medicine says that doctors should be in charge of a person’s care, and that information is there for our use in that care.  Giving patients information, such as lab results, is viewed as a “Pandora’s box,” resulting in more questions than answers.  ”Just trust me with this information.  I’ll let you know if there is anything bad” is the message sent off.  But that money from “meaningful use” is tied to patient communication, and many docs will communicate with patients only as much as is necessary to abide by the “rules.”
  2. To make patients happy – This is the school of thought I once subscribed to (betraying much codependency on my part).  Did I think it improved care?  Not necessarily, but it seemed like what people wanted, and it did provide a safety net once people were used to getting results, as they would contact me if they didn’t hear back from me.
  3. To improve care quality – The Annals of Internal Medicine recently released the results of the Open Notes study in which patients were given access to their entire medical record.  Going into the study, many participating physicians worried that patients would be confused and have increased anxiety over the results in the record, but the result was the opposite.  Not only were patients happier with access to their charts, they reported significantly better compliance with medical treatment.  Physicians were in agreement that this was a step forward in better care, with none of the doctors participating in the study choosing to stop offering chart access when the study finished.

The “Open Notes” study showed something we physicians are reluctant to accept: our patients think for themselves and want to participate in their own care.  What the study didn’t address (mainly because it was done in large institutions with a single medical record) was whether or not access to the record reduced the overall cost of care through reduction of duplicate services.  If I have a chest x-ray in my PCP’s office and then later in the week go to the ER for persistence of the symptoms, the chances are above average that the x-ray will be repeated.  If, however, I walk into the ER with a copy of the x-ray report, the chances drop significantly.  Furthermore, when patients go to the ER or to specialists for the first time, they are required to give their own medical history.  Having access to their records will free people from having to remember all of their past information, instead letting the new provider to get it (unfiltered) from the actual record.

The real reason patients should have access

This leads to the obvious conclusion which is now whacking us over the head mercilessly: Patients should have access to their records because they are their records.   The fallacy behind a “portal” which severely hampers its usefulness is that it assumes that the “official” medical record should be that of the doctor.  Why is this?  We use patients as our “interface” between different medical providers all of the time.  This happens because the other interfaces don’t work.  I often have to ask patients “what did the cardiologist tell you?” or “what happened while you were in the hospital?” as I never got records of either.  I change what is in the “official” record based on these kinds of questions. “Are you still taking these medications?”  ”What has your blood pressure been running?”  ”Have you changed jobs recently?”  These are all things I ask patients, and then, as a good transcriptionist, I change the “official” record accordingly.

Why not put this in the hands of the one whose life depends on it: the patient?  Why rely on portals, or health information exchanges?  Why not just give all of this information to the patient in a secure patient record?  Yes, there could be hacking, and there will be some people who want nothing to do with this responsibility; but there will also be far more informed decisions made by clinicians who have access to the “official” record.  We do a huge amount of harm to people by “protecting” them from the information in their own charts.

My goal is to center my care on the patient, and perhaps the most important step in that process is to give them their own records.  It is a cornerstone of my new practice.  I will contribute to the PHR and can see it (as long as they give me permission), but in the end, the patients should have their own records.  Anything less than that, in my opinion, is acceptance of a lower standard of care, which would go against the central reason I left my old practice and am starting the new.

Rob Lamberts, MD, is a primary care physician practicing somewhere in the southeastern United States. He blogs regularly at More Musings (of a Distractible Kind)where this post first appeared. For some strange reason, he is often stopped by strangers on the street who mistake him for former Atlanta Braves star John Smoltz and ask “Hey, are you John Smoltz?” He is not John Smoltz. He is not a former major league baseball player.  He is a primary care physician.

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6 Responses for “Tool Kit: Why Portals Don’t Work Very Well”

  1. I agree that patients should not be “protected” from their medical records and that they should have immediate access to all information. However, I believe that it is your responsibility as the patient’s Medical Home to aggregate, maintain and oversee that “official record”. This is why the original Medical Home term was coined almost 50 years ago, and although it has been augmented greatly over the years, this should be one of its primary functions.

    Health Information Exchange should greatly facilitate your ability to maintain such record and make it available to all other providers of care as needed and as directed by the patient, who should have the ability to contribute to the record, as best he/she can, in a way that maintains the medico-legal integrity of the record. Perhaps the functionality to allow this is not there just yet in most EHRs, but it is being built as we speak.

    The term PHR is in my opinion superfluous. The EHR of the Medical Home should be the PHR, and I am not ready to absolve the PCP of the responsibility to maintain and oversee the records.
    And yes, I know that this should be a reimbursable activity, and I think it is becoming one as the “care coordination” discussion is advancing.

    From a pragmatic point of view, you probably understand that making patients responsible for accurately aggregating their medical records and properly acting upon the information in them is just going to widen existing disparities in care quality, which will be classified as an unfortunate unintended consequence. I think we are paying enough for health care to expect that this administrative function should be included in the service.
    And one more thing, I don’t think that patients “are their records”, and I don’t believe you can possibly have meant that, based on your wonderfully compassionate writings over the years.

    • Rob says:

      I fell prey to an ambigious pronoun. Patients should have access to their records because they (the records) are THEIR (the patients) records, not they (the patients) ARE their records. Badly written.

      The difference in my view is based on my vantage point: I am a solo physician who is disconnected from the rest of the system. The only way I’d have access to a large database in which to have my patients’ data entered would be to be bought by the large local hospital system and use their EPIC system. I would rather chew glass.

      I really, really think that giving hospitals the task of lowering the cost of care is as foolish as putting my cat in charge of the tuna supply. “Big data” costs big money, and unfortunately (and tellingly) hospitals are the main ones with enough money to afford such systems. An HIE run by the government is the logical solution outside of hospitals, but with the knee-jerk aversion many have to the government running something with access to ALL personal data (many of my patients included), I doubt that has much more of a chance than the tuna with my cat.

      I think the choice is either a centralized HIE type system (or a PHR) or a decentralized system (like banking) with the patient having a key to their data wherever it resides (and the ability to grant providers access when needed). THAT is what I think is a safer system, but then the other players in the game will have to open up that access. In the mean-time, I see my role as a curator of the medical record to be put in the hands of the one who benefits the most.

  2. nir pengas says:

    here is exactly where washington can step up to the plate and shape what an HIE 2.0 really needs to be at the state level: a central place where the PHI is normalized and archived for easy access. as long as HIEs keep aggregating this model will stay okay at best, if not fail completely. at the end of the day, however you turn it, a real solution means the record at it’s entirety is centralized. ideally encouraged and standardized by state and federal law.

  3. Rob, couldn’t agree with you more. Who knows more or cares more about me than me so why shouldn’t I have all my records? Who can make my doctor’s life easier if I show up with all my information in easily manageable form that
    he or she can quickly read. And one important point you left out, who other than me will check to see that my doctor’s notes are correct?

    My records are riddled with mistakes — which could have severe consequences if I were wheeled unconscious into an ER. According to some of my records I have asthma, hypertension and diabetes — but I don’t! I had an operation on my left ankle but my records, including the surgeon’s operative report, say I had a problem with and operation on my right ankle! If I don’t correct these mistakes, who will? Lest you think this an isolated case, a study in the UK last year concluded that 30% of patient records contain mistakes!

    I confess that I don’t understand why anyone would disagree with your position and to that end we have developed a product that does precisely what you call for. It gives the patient ownership and control of all their records from all their providers in all formats that they can give to their providers at the point of care. It’s called MedKaz – you can read about it at MedKaz.com. When I show up for an appointment, my doctor logs on to it and information is waiting for him that brings him up to speed about me very quickly, saving him valuable time. They love it! And if they want to know about care I received from another doc, they can access it instantly (even if it is a paper or disparate electronic record).
    In contrast, if my records were on each of my doctors’ portals, my doctor would have to spend excessive time going from portal to portal to learn about my condition.

  4. sm2012 says:

    I admit I’m very conflicted about this.

    Theoretically, I agree that the patient’s data is their data. Thus, they should have it. When I have received care in another country, the doctor saw me and handed me the note he wrote. Part of it was the recommendation for an Mri with the note serving as a prescription in addition to documentation (he didn’t keep any record so it was entirely on my shoulders to maintain that). I liked knowing my doctor’s thought process and having control of the information.

    But I’m a surgeon. I couldn’t agree more with Margalit’s comment that making patients responsible for aggregating and acting on data would significantly worsen disparities. I have worked in a VA system for many years and despite their problems, they continue to have one of the earliest and most broadly used electronic systems. Even then, there are a huge number of mistakes – something that patients complain about constantly. Not having control of their data certainly propagates this, even when they complain to their primary care physicians to correct certain notations.

    I do think there would be a real reduction in costs by decreasing duplication of work due to poor information recording and to help clarify communication between providers. But, I recall a patient recently with whom I discussed the importance of smoking cessation. He became angry and left the office and eventually complained to an administrator that they felt that my job was simply to be a technician for an elective surgery that they wanted and not give them advice on the importance of stopping smoking. I can only imagine how they would feel if they saw in my note that I also felt that they were ‘obese’ or that ‘I did not feel that surgery could be safely performed given (their) smoking’. Even if it’s exactly what I told them, I could just see the angry patient who doesn’t want to do the heavy lifting of making change in their lives taking a note to a lawyer and create huge hassles, even if to be resolved without incident in the end.

    Rob, I really appreciate the desire to chew glass rather than give up your independence and cave to both the hospital buy out machine or Epic! That being said, I think the combination of bundled payments and the information flow issues you point out may make the independent practice of medicine a model that no longer works. I hope you prove this wrong!

  5. Joseph Daigle says:

    There is one problem today I think which has really been exploding in the last 4-5 years: patients don’t stay with one primary care doc for very long. I believe the main cause of this is because health insurance is tied to employment for basically everyone in the US. As people lose or change jobs, move around the country to find jobs or otherwise, their health insurance changes. When you change health insurance it is likely that your primary care doc will also change. Even if you don’t change jobs, employers today are likely to switch insurance plans to reduce costs. Personally we have changed insurance and primary care doctors 3 times in the last 4 years.

    The idea that your healthcare provider can be a “Medical Home” is frankly out dated. Oddly enough the insurance companies probably know more about your medical history your own doctors.

    As much as I like the idea of a PHR, you also have to consider the marketplace and how competitive it is. Can your practice integrate with all of the PHRs on the market your patients can choose from? How expensive does that become? What about information gaps between the various PHR vendors?

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