Patient Portal Access

A couple of weeks ago, I wrote about getting a phone call from my dermatologist, and getting the news that a biopsy was negative, and I was fine. I wrote about those few seconds before she gave the actual news, and trying to find clues about what the news will be.I think that's a very common experience.

A reader named JM left a comment: "This why I like messages in my Portal 😂 I can skim the info and don't have to do the voice interpretation."JM included a laughing face, though I think this is a common experience, too. 

I was going to write a comment back to JM, and by the time I got around to it, I had found a new article from the Journal of the American Medical Association called "Unintended Consequences of Patient Portal Access." It summed up pretty well what I was going to write to JM.

For those who need a reminder: starting in 2021, a law in the United States required that patients get immediate access to doctor's notes. In the past, this wasn't so easy. You could request access to doctor's notes, but because they were handwritten, it would mean sending a written request to the doctor, and then having to wait until someone in the office could get around to photocopying what was in the paper file. If you were switching doctors, this was fine. But if you wanted immediate access, this was almost impossible.

That changed in 2021. By that point, records were electronic. All of a doctor's notes had to be put into a "patient portal," on online database for each patient that could be accessed as soon as the notes were entered. Same with test results like blood work or PET scans. 

The idea, of course, was that patients have a right to information. Anyone who tried to get records from a doctor 10 years ago knows how frustrating it could be. In my experience, getting records didn't seem like a priority, so it could be days or even weeks to get the information I wanted.

Of course, if the purpose of getting the doctor' notes was to find out a diagnosis or test results, I was likely to get an appointment with the doctor to discuss them face-to-face long before I got any photocopies in the mail.

But Patient Portals change all of that, and make it more complicated, as the JAMA article points out.

For example, a cancer patient can get blood test or scan results even before the oncologist has seen them. That's great, in terms of transparency -- we have a right to information about our bodies. 

But the downside, as the article says, is that we sometimes get data without context. Raw numbers might not tell us much, or we might not understand them. So we go to our favorite health website to find out what something means, and it says we have a higher than normal level of that thing, and we then we read about the potential bad things that the high level can mean. In the hours or days before we get a call from the doctor (or a message in the portal), we might have caused ourselves unnecessary panic.

I had this happen a couple of months ago. I wasn't panicked by it, but a routine blood test for my annual physical showed a higher than normal level of "bad" cholesterol, and I dreaded the conversation with my doctor about having to add another pill to my routine or change my diet. When she did call, she said it was fine -- my last 5 blood tests had all showed an elevated level, all within the same small range. So it was more important that it wasn't spiking -- it was high, but level. That context mattered.

Cholesterol isn't a big deal, but that same situation involving cancer could be. 

The article brings up another interesting perspective, though -- how much the Patient Portals have affected doctors. I know it takes them much more time now than it did in the past. I've heard this from several doctors, and I've had two oncologists who left their practice because the electronic records became so overwhelming (one retired and one transferred to a new job with more research and less patient interaction). So that's one way it has affected  oncologists.

But the other way, according to the article, is that Patient Portals and Electronic Records might make doctors less empathetic. It's not just a matter of doctors having to take time away from patients (I've had doctors who barely looked up from their laptops during an appointment as they tapped away at the notes they were taking). But less interaction with patients can mean less time getting to know them, and over time, doctors might lose the practice they get in understanding a patient's emotions. If a patient gets the news, processes it on their own, and then meets with the doctor afterwards, it's less about figuring out how to deliver news and more about answering questions and correcting mistakes. Those are two different ways of thinking when a doctor is preparing to meet a patient.

So maybe JM is better off this way, getting news from a Patient Portal message. The message provides some content, anyway. It could be the best of both worlds -- you don't need to wait for a face-to-face appointment, and you still get to hear from the doctor with an explanation, and not have to guess on your own. But this requires some ability to ignore the notification that test results are in the portal, and wait for the notification that there's a message from the doctor.

I'm sure we all know by now that there are trade-offs when it comes to technology. For every problem that is solved, a new one is created. 

I hope you are all able to find some balance with this.