The Problem with Electronic Records

 Interesting article in this month's JCO: Oncology Practice, a journal aimed at clinicians (the oncologists that we see in their offices -- the ones that deal with us directly). It's called "Communication Skills Training for Oncology Clinicians After the 21st Century Cures Act: The Need to Contextualize Patient Portal–Delivered Test Results." It's aimed at oncologists, but it has some important lessons for patients, too.

The article looks at the complications that have come with a United States law called The 21st Century Cures Act, which was passed in 2016. The law made a lot of changes, especially in ways that allowed the FDA to approve treatments and medical devices more quickly and incorporate more patient experience into the process. 

But another big change had to do with patient access to medical records. Changes had already been put into place that gave patients much more access to records by encouraging electronic medical record-keeping. I'm sure all of us are familiar with MyChart, or MyChartPlus, or FollowMyHealth, or PatientNow, or ModMed, or whatever Electronic records platform your doctor and hospital use. (Or, more likely, you have records with a bunch of different platforms, like I do. And none of them connect to each other very well, so one doctor has to print out a record and fax it to another doctor, who has to scan it and add it to my records, so everyone has everything all on one place. It's ridiculous.)

Anyway, aside from the lack of communication among all of these platforms is the problem that comes from patients having too much access. Before the 21st Century Cures Act, patients usually had about 24-48 hours before their test results (or other information) were available to them. The Cures Act changes that so the results were instant -- once the test was complete, it was put into the Electronic platform, and patients would see it immediately. 

As the article points out, this can be a problem. Maybe this has happened to some of you -- you had a scan, or a biopsy, or a test, and you were nervous about the results, so you checked your records every 5 minutes, and then when the results were posted, you had no idea what they meant. Or maybe the results were really clear, but you didn't know if they were good or bad, or just how good or bad. 

I think this happens a lot. There's a real tension between two important things. Patients should have access to test results. They are, after al, our results. But the other thing is that a doctor needs time to look them over, too, and be able to explain them. And maybe that phone call with an explanation is going to take a few hours, because the doc is seeing other patients. Or worse, the explanation is going to mean an in-person visit, and that could takes days before it happens.

The article offers some possible solutions to this, including going back to the 24-48 hour delay, so the doctor has some time to look things over and explain them. Or another solution: include links to videos or other resources that can give general explanations to some of the things in the chart. Some information might be better than no information.

I'm not sure there's an easy solution, other than having a doctor always be available to talk about what's in your chart, which is impossible. 

The solution, from our end as patients, would be to all agree to just hold off looking at the chart until the doctor had time to look at the results and get back to us. But that's pretty much impossible, too. Information is available, and we're going to look at it. (It's a lot like some doctors who tell their patients not to Google things. That's just not realistic. Our computers and phones are right there in front of us, and we have questions.)

But we can at least understand the consequences. The article recognizes that, for some patients, this is a good thing -- it can be empowering to have information, and to then find answers to the questions we have, without waiting for the doctor.

The problem comes with where we find those answers. I've seen lots and lots of patients go to other patients in online groups and ask questions. There are often lots of answers provided, and one of them is correct. But how do you know for sure which one?

I think the answer, in the end, is that we all have to deal with the difficulties that come from trial and error. The first time we do this, we panic and until we talk to the doctor and get the answers we need from (hopefully) the person who understands our situation best. After that first time, ideally we'll know what works best for us -- waiting for the doctor, finding answers on our own, or just not reading the chart. 

In the end, this is about understanding ourselves. And in an ideal world, that's what having cancer does -- give us a chance to get to know ourselves better, and understand what we need as patients, and how to get it.