What is a "portal?"
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:
- To access what's on the other side, a person must find the portal.
- 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."
- 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."
- 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.
- 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.