Open Oncology Notes: A Qualitative Study of Oncology Patients' Experiences Reading Their Cancer Care Notes

Dr. Nathan Pennell and author Dr. Thomas W. LeBlanc discuss how open notes have become a routine part of the patient experience, and why physicians might want to elicit and address concerns that arise from notes.
Read the related article "Open Oncology Notes: A Qualitative Study of Oncology Patients' Experiences Reading Their Cancer Care Notes" on JOP
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Hello, and welcome back to the ASCO Journal of Oncology Practice podcast. This is Dr. Nate Pennell, Medical Oncologist at the Cleveland Clinic and consultant editor for the JOP. Now many clinicians have probably noticed over the last few years that both in oncology and in medicine, there is a movement that patients should have better access to their electronic medical records, and that often includes clinicians' notes.
This is a concept known as open notes, and in the modern world we live in, where information is readily available 24 hours a day and seven days a week, it makes perfect sense for medicine to follow suit. However, little is known about the real risks or benefits to cancer patients of this open note movement. Is it a positive thing that builds patient empowerment and improves trust, or are their potential negatives such as risk of misunderstandings and privacy concerns?
Joining me today to discuss this topic on behalf of his co-authors is Dr. Tom LeBlanc, Associate Professor at the Duke Cancer Institute, to discuss his paper titled Open Oncology Notes: A Qualitative Study of Oncology Patients' Experiences Reading Their Cancer Care Notes, published online on the JOP in February, 2018. Tom, thanks so much for joining me today.
Thanks so much for having me.
So can you tell me a little bit about this whole open notes concept?
Sure. So as you probably have seen, most of the modern electronic records that many large health systems are using, and even smaller community practices, come with things like patient portals. And increasingly we're seeing that practices are starting to turn these on and to turn them on in more significant ways.
So the traditional way was that patients could have a kind of one-way exchange of information where they could just read things like their laboratory results, or maybe X-ray reports and things like that. Now we have two-way communication. They can send messages back and forth to their clinicians. And some places, like Duke, for example, and many other centers like it, have even allowed patients to read parts of their electronic records, in this case, their progress notes.
And as you mentioned, this is part of more of a movement towards patient-centered care where the idea is that by increasing transparency, we would hope that people might be more engaged in their care.
It sounds like this was a real need to do a study like that. So why don't you take me through your study? How did you do this?
So basically, we went into the Oncology Treatment Center and tried to find patients who had already used this system. And so we decided that we would focus first on patients who had advanced cancer because we felt like that was the area where maybe we were most concerned that a patient might read or see something that they didn't know that might really make them upset or create anxiety or worry. So we started with that particular population.
And as part of the screening, when we were looking for advanced cancer and folks getting active treatment in the Oncology Treatment Center, we also looked for people who had an active MyChart patient portal account. And then we went and screened amongst those folks for those who had actually already read a note.
So if you imagine, these are kind of the super users of the patient portal. There are a lot of people who have signed up for the patient portal who have never logged in, for example. We didn't talk with those folks. There are many people who use it regularly to review labs, but didn't even know that you could read notes. We didn't talk to those folks. We really only talked with people who had actually used and accessed the notes.
And then we conducted a semi-structured qualitative interview. So we basically had a guide with a series of questions to help us better understand certain things that we were really interested in. Like for example, we wanted to know overall what people's experience was like reading these notes, but we also wanted to know about what things they might change. So we kind of ended it with a request for some kind of feedback and suggestions about their experiences. And we did that for 20 patients in the cancer center.
So what did you find in these interviews?
And actually, one other thing I should mention about that too is as part of these interviews, also, we opened up the patient portal and then had them read through a note along with us as part of the interview, and had them kind of out loud about what it was like to do that and what they were sort of thinking and gleaning from what they were reading. It was kind of an interesting thing where we learned some surprising findings.
Yeah, I imagine so.
To talk a little bit more about what we actually found, when you do these kind of qualitative studies, although the number of patients interviewed, of course, is small-- like I said, this was just 20 patients-- you end up actually with a lot of data. We audio recorded and then transcribed these, and then a group of us read through these interviews and coded them for what types of things we thought were going on when patients said x, y, or z, and then in the end, collapsed all of these different kinds of codes into some general themes about what we thought was going on in these interviews.
And the general themes were fourfold, basically. First, we found that reading notes increased comprehension overall. Second, that there seemed to be this kind of reduction in uncertainty or anxiety, and actually this enhancement of feeling in control. Third, we also heard a lot about increased trust, like in the cancer care team or trust in the oncologist that was seeing and managing that patient. But then lastly, we did find just like in some of those primary care studies, that for at least a minority of patients, there did seem to be some increased anxiety associated with reading these notes.
I mean, in some aspects, you said that they actually had less anxiety, and some that they had more. Is there anything you were able to pick out that would indicate one or the other of these being at higher risk? Or was it completely dependent on the individual patient?
Yeah, it was really interesting. The sense that I got from listening to these interviews and conducting some of them is it really seemed like the patients who were more anxious were kind of a different breed than the people who felt more in control and empowered by reading the notes. So if you listen to the interviews from the more anxious patients, some of them actually described almost this compulsion. Like they would get this alert on their phone, this push notification that says you have a new note that you can read now in your portal.
And they would know that it was going to make them more anxious because they had had the experience before. And yet they did not feel like they could avoid looking at it. They just felt this compulsion to open it and to read the note. And they knew they were going to feel bad about it, and maybe be forced to confront some things that they didn't want to confront about [? notes apps, ?] but they did it anyway because it was made available to them.
And some of these people actually said, I wished that I could turn that off, or I wish I didn't know about it because I don't really want to look at these things. But now it's there and I know it's there, and I just can't help but look.
And if you contrast that with some of the other patients, we …