I have an oncologist appointment next week. I have one every six months, and I like it that way. My oncologist says I an see him once a year, but I feel better seeing him more often, even if I'm feeling fine and I'm not having any problems. I'll be sure to give you all a report next week after the appointment.
As usual, I received an email a few days ago, asking me to go to my Electronic Health Records and make sure everything was correct. The list of medications and the list of diagnoses get longer every time I look at them. I guess it happens with age. Everything was fine.
About the same time, I needed to have a blood test done for another doctor and another condition. This doctor's office has its own Electronic Health Record. I think I deal with 4 different EHR systems.
One thing surprised me, however -- my Follicular Lymphoma diagnosis. It says I have grade 3 FL with extranodal activity. That's not correct. I have grade 1/2 disease, and no extranodal activity.
My immediate thought was panic. It didn't last long, but I thought, "Did my last blood test show something and no one told me?" But that thought didn't last long. A blood test wouldn't show any of that, and I know for sure that I haven't had a biopsy recently. So the panic came and went pretty quickly.
But I thought about it some more, and decided it shouldn't be dismissed. It wasn't in my oncologist's EHR. It was in my general practitioner's record, which matters less, since she doesn't treat me for cancer. My guess is that someone entered the information in my record after looking at old notes, and mistook stage 3 (which I am) and grade 3 (which I am not). As you probably know, stage is determined by location of disease, usually determined by a scan. Grade is a measure of how aggressive the disease is, usually determined by a biopsy and looking directly as the cancer cells.
So why is this important? Well, accuracy is always important in medical records. And I've had a bunch of inaccuracies over the last few years that I can't explain easily. If someone is looking at a "conditions" page because they're trying to determine something like which treatment or medication to recommend, they may base it on comorbidities. In other words, if there's something inaccurate about a kidney condition, they may recommend a more aggressive treatment for another condition -- or maybe a less aggressive one. So accuracy just matters in general, even if it's about a condition that isn't being treated by a particular doctor.
Another reason accuracy is important is because of potential voluntary data sharing. There are more studies happening that rely on data sharing. In other words, researchers can learn a lot by looking at large numbers of patients' records. The Follicular Lymphoma Foundation did a webinar on this a few months ago. It's a really interesting way to contribute to research without being a part of a more traditional clinical trial. But for this to be valuable, the data has to be accurate.
But there was something else that bothered me about the mistake. It's less about medical accuracy, and more about identity. I've spent 18 years as a stage 3, grade 1/2 Follicular Lymphoma patient. It's who I am. Obviously, that changes over time for many of us. We have successful treatment. Or treatment unfortunately stops working, and we need a new biopsy and a re-staging. FL is a notoriously unstable disease. I'm sure over 18 years I have gone up and down in stage.
But that's never been official. No biopsy, no scan in about 8 years. So the stage 3, grade 1/2 is who I am. And I don't like someone else telling me who I am. And that's what that mistake was doing.
It's a little strange. As much as I have enjoyed being a cancer advocate, I would have preferred to have not had the cancer diagnosis. I'm sure I would have been able to find something else fulfilling to do. So taking that diagnosis off of my Conditions page would have been just fine. But it's there. And I own it. And I don't want anyone else messing with it.
So I suppose the lesson here is to take some time to make sure everything is accurate on your Electronic Health Records -- all of them. I don't always pay attention to all of the details on them. They're like Terms and Conditions when you download an app -- just scroll through them and say Yes at the end so you can get to that doctor's visit that much faster. But the details matter, for now and for later.
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