When records are wrong, patients are at risk [PODCAST]

Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes

“Inaccurate patient records aren’t just an inconvenience. They’re a risk. The EHR might speak for the patient when they cannot speak for themselves, and if it’s wrong, it’s a serious liability.

In lieu of any system-wide improvements to EHRs, I try to be vigilant. I ask the medical assistants to review the medication list at every appointment, if I can. Luckily for me, my chart’s problem list is accurate now that the HNHSA diagnosis has been removed. All the same, I worry that if a medical assistant mixes up my conditions and punches in the wrong ICD code again, the chart will suffer. And I worry that if it happens, correcting the issue will prove difficult again.

EHRs are wonderful additions to the clinician’s toolbox, and they aid patients in accessing their records and having clear information about their health. However, some adjustments are necessary, including a more effective way to screen for and correct errors, so this tool will always be helpful and do no harm.”

Denise Reich is a patient advocate.

She shares her story and discusses her KevinMD article, “When records are wrong, patients are at risk.”

Reflect and earn 1.0 AMA PRA Category 1 CME for this episode.

---

Did you enjoy today’s episode?

Please click here to leave a review for The Podcast by KevinMD. Subscribe on your favorite podcast app to get notified when a new episode comes out!

Do you know someone who might enjoy this episode? Share this episode to anyone who wants to hear health care stories filled with information, insight, and inspiration.

Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system and are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we welcome back Denise Reich. She’s a patient advocate, and she wrote the KevinMD article “When records are wrong, patients are at risk.” Denise, welcome back to the show.

Denise Reich: Hi, thank you so much for having me back. It’s great to be here.

Kevin Pho: Now, for those who did listen to our previous episodes, let’s briefly share your story and your journey to where you are today.

Denise Reich: My name is Denise Reich. I write when I can, and I am also an advocate, when I can be, for primary immune deficiency and women’s cardiac issues. I have been diagnosed with a form of primary immune deficiency, which is an inborn defect of the immune system. I also have a number of cardiac issues and orthopedic issues, and I try to raise awareness for those when and where I can.

Kevin Pho: I always love having patients on the show because, as clinicians, we need to hear the perspective of patients in our health care system. A lot of times, we simply don’t have a good sense of what’s going on from that patient perspective. So I certainly value you coming on the show and sharing your story. One of the stories that you wrote was on medical records, “When records are wrong, patients are at risk.” Now, for those who didn’t get a chance to read your article, can you just walk my audience through it and share the reason why you decided to write it?

Denise Reich: Sure. The article was prompted because last year there was a very major error in my electronic chart. Somebody, for some reason, had coded in an ICD code for a very rare genetic form of hemolytic anemia. It was the type of thing where, if your patient had it, not only would you know, but your entire department would know, and somebody would probably be writing a paper about it, because it was something that was in the rare disease registry. I think it was less than 100 people in the world, with an average life expectancy of 12. It was not something you would find in a garden-variety patient, but it had somehow ended up in my chart.

Because all of the electronic charts are now linked through Epic and Cerner, it was in all of the hospital system charts. To this day, I actually do not know who put it in the chart, because the name of the clinician was not even somebody that I recognized. Unfortunately, it took a very long process to get it out of the chart. There was one health care system that was able to remove it immediately, but there was another where I had to make a formal written complaint to the health system to get it removed, and every single one of my doctors had to sign off that it was incorrect.

When I tried to argue with them about it, they were basically acting like I just didn’t know what I was talking about. They said, “Oh, well, maybe you know it by another name. Maybe somebody put it in during an emergency room visit. You probably just don’t know what it is.” They weren’t really listening to me on it. It was a very long process, and usually that doesn’t happen.

But it does speak to a larger issue: When things are in patient charts and they’re wrong, because they’re electronic health records, they can be disseminated not just to that person’s doctor, but to anybody who potentially reads that record. There have been other things incorrect in my chart that have taken a while to unravel. A big one is medications. I have found, in some cases, a medication that was prescribed to me once 5 years ago listed in my chart as something I’m taking on a regular basis. So there isn’t a lot of discernment, and unfortunately, when these errors occur, it’s not easy to fix some of them, and it does put patients at risk, because everyone is now reading this chart.

Kevin Pho: So take me back to the time when you initially found that error, where you had that diagnosis of that very rare hemolytic anemia. How did you find out about it, and what did you immediately do next?

Denise Reich: Well, I do read my chart, and I do get copies of my records just to have, in case I ever need to send them to anybody else. So I was just browsing through the list of my conditions on my chart, and I came across it. I had to Google it. I had no idea what it was. It was not something I had ever heard of, and I had never heard of anybody diagnosing me with this.

The first thing I did was, the next time I had a doctor’s appointment at that health system, I told the receptionist, “This is in my chart. It needs to be removed.” Unfortunately, that led to a conversation about, “Well, maybe you just don’t recognize the name of it.” From there, every time I had a visit with a doctor, I would tell them, “This is in my chart, and it’s wrong.”

At one health system, like I said, it was very easy. The clinician took one look at it, said, “Wait, this is ridiculous,” and just pulled it. But at the health system where it was originally added, that didn’t happen. Unfortunately, even though my doctors did try to remove it for me, they couldn’t. The health system was telling them, “Well, only the doctor who originally added this is able to remove it,” and none of us knew who that was. As for the name of the person who had added it, it was actually not even a doctor. It was a nurse. So it was even harder to track down who that was.

Kevin Pho: Now, in terms of the diagnosis list and the problem list, were there any conditions similar to that rare hemolytic anemia that you had?

Denise Reich: The only thing I can think of is that I do have another condition that starts with the letter H that was only recently given an ICD code in the last couple of years. So my own hypothesis is that whoever put this in the chart didn’t see the right code, saw the hemolytic anemia, and said, “Oh, well, the patient must be wrong. So this must be the right one.” But there are so many diseases with the letter H that how they came to that particular conclusion is a mystery to me. Like I said, it’s one where, if a patient had it, everyone would know, because it’s so rare.

Kevin Pho: Now, you mentioned some hospital systems could remove it very easily, and some had a long, drawn-out process. So go through that long, drawn-out process. What were some of the steps or hoops that they made you jump through to try to remove this error in the chart?

Denise Reich: Well, first, like I said, I tried on the ground. I tried with the receptionists. I tried with the doctors themselves. The doctors, of course, who know me and are treating me knew immediately that it was not supposed to be there. They were unable to remove it. One of the doctors tried to go to the IT department. They basically said there was nothing they could do because they didn’t add it.

So I had to go on their website and download a formal request to amend the record, and then write a written statement as to why this diagnosis was not supported. From there, I had to send it to the university, or fax it to the university, because it was a university health care system. Then, on their end, they had to go to every single one of my doctors in the health system, talk to them, have them sign off, and change every single progress note, because the list of conditions, the problem list, was always at the bottom of the progress note. So they had to go back and change, like, a year of progress notes and sign off on every single one of them. They had, like, five different doctors who had to do this. It probably was not fun for anybody.

Kevin Pho: Can you give us a sense of how long this whole process took?

Denise Reich: It took almost, probably, 8 months before I finally was able to fix it. The sending in of the form alone took a good 6 weeks. Before that, I had been trying every way that I could to get it out without going to the formal amendment process. It was only when I really realized, “OK, this is really not going to work, because it’s not removable,” that I went to doing the formal process to amend the record.

Kevin Pho: Did you primarily do this on your own? Did you have any help, or did the clinic offer any support as you were going through this process?

Denise Reich: Oh, no, they didn’t know how to do it. They didn’t know how to do it. Basically, what I got from the doctors was, “Well, I tried. I’m sorry.” They didn’t have any idea. Like I said, one of the doctors did reach out to IT to see if it was some type of tech error: Was it the system putting in codes that shouldn’t have been there? But other than that, I was mostly on my own to try to figure out how to do this. So I ended up going through the university website, looking in patient experience, looking in records, and going to the medical records pages to download the form I needed and figure out what needed to be done.

Kevin Pho: You mentioned that you had other errors in your medical chart when you browsed it from Epic’s MyChart. What are examples of some of the other errors that you mentioned?

Denise Reich: The biggest one is the medications, because the medication list is completely non-intuitive. It takes everything that you’ve ever been prescribed, ever, and acts as though you’re currently taking those medications. So there have been a few times where I’ve been prescribed one tablet because we’re doing a test, or there’s a prescription I took 5 years ago that was discontinued, and I’m looking in my chart, and there it is among my current medications, as though I’m taking it regularly. Rescue medications, things like my EpiPen and my rescue inhaler, also show up as something that I’m taking every single day.

I’m on IVIG, which I get in the hospital, which technically is not a med that’s handled by the pharmacy. It’s handled by the hospital, but it does need to be in the chart, because they need to know I’m taking it. Getting them to enter that information correctly, I mean, at times it’s been like the “Who’s on First?” skit, where I’m trying to explain what it is, and they’re just not. They’re like, “Oh, well, you inject it into a vein.” “No, it’s an infusion. I get it at the hospital. They do it.” We go back and forth, where they don’t understand what the medication is and who’s handling it, and the doses are off.

That’s been an adventure, trying to get that one corrected. With that one in particular, when I’m meeting with a new doctor, and even when I’m meeting with my regular doctors, I will make a point of saying, “I’m still on IVIG. This is the dose. This is how often I’m getting it,” because I can’t trust that the medical record will reflect it accurately.

Kevin Pho: I can say from an internal medicine primary care standpoint that your story is not uncommon. Not to excuse any of this that’s happening, but one of the reasons this happens more frequently than we’d like is that so many people have access to your chart. If you go to the emergency room or urgent care and they prescribe a one-off medication, it doesn’t necessarily fall off your chart. It gives the impression that you’re constantly taking that medicine. The pharmacists have access to your chart; whenever they refill or prescribe a medication, it gets automatically uploaded to your chart. And I think that not all medical providers are as meticulous with patients’ charts as they should be. So I think that is one of the issues here: There are too many proverbial cooks in the kitchen, and that leads to messy patient charts. Your story shows how important it is to really be on top of things and to check it regularly.

Denise Reich: That is a really good perspective to hear from your end as to why this happens, because nobody’s being careless, but as you say, there are so many people with access to the chart. And then there’s the fact that the software itself apparently is not particularly intuitive. It doesn’t pick up: When was this filled? How many times was this filled? What was the quantity? When you’re filling something and it’s literally one tablet, maybe that shouldn’t be on the list. It doesn’t do that.

I think it does become a danger, though, because, as you said, they do access these charts in the emergency room, and they’ve become the equivalent of a medical alert, more or less. If, God forbid, somebody’s in an accident or cannot speak for themselves, and somebody’s running this chart, and they see all of these incorrect medications or incorrect diagnoses, that patient might be treated in a way that is dangerous for them. They might be given meds that they’re actually not taking, or not given meds because they conflict with the meds that are on the chart. So I think that’s the real reason it’s really super important. I can go into a doctor’s office and clarify things with them, but if, God forbid, I’m in a position where I can’t clarify, it could become a problem.

Kevin Pho: We’re talking to Denise Reich. She’s a patient advocate, and she wrote the KevinMD article “When records are wrong, patients are at risk.” Denise, what kind of advice do you have for patients to prevent similar things from happening to them?

Denise Reich: The biggest thing patients can do, number one, and it’s kind of obvious advice, is look at your chart. Make sure that every time you have a doctor’s appointment, even if it’s with a clinician that you go to all the time, you look at the chart. If you’ve gone to urgent care, if you’ve had any type of temporary prescription, for an infection or something that’s acute that you’re not going to be taking for a long time, look at your chart. Every time you see something wrong on the chart, make sure that you tell somebody about it. Some of the systems will give you a chance to flag something as incorrect. You can’t pull it from the chart, but you can actually put a note in saying, “This is not right, and here’s why.”

So I think it’s really important for patients to have access to the patient portals. Look at the chart that’s there. Anything that’s wrong, just note it and bring it up to the doctors. If there’s a consistent problem, look into how you amend it in that particular patient system, if it’s something that’s harmful. Like I said, with the diagnosis that I had, if, God forbid, I had gone into a hospital and somebody had thought that I had hemolytic anemia, they might have been treating me very differently.

Kevin Pho: And my final question: What are some of the take-home messages that you want to leave with the KevinMD audience?

Denise Reich: OK, first thing, for patients: Be vigilant about your chart. Look at it often. The minute you see an error, correct it, or try to get it corrected any way that you can. Talk to your doctors, talk to the health care system, and let them know that it’s wrong.

For doctors, I would say that this is something where I think doctors’ input, collectively, might make a change. Obviously, doctors have a lot of things to worry about, and the charts are probably not the least of everyone’s issues right now. But at some point, doctors collectively telling their hospital systems, “The charts are wrong. It’s impacting the way we treat our patients. We are not happy.” Unfortunately, I don’t know what goes on behind the scenes on your end, but hopefully, if enough doctors did come forward and say that it’s a problem, they might be willing to look at how these systems are working and find ways to make them more accurate.

Kevin Pho: Denise, thank you so much for sharing your story, time, and insight. Thanks again for coming on the show.

Denise Reich: Thank you so much for having me.

Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes