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

Support for JCO Oncology Practice podcasts is provided in part by AstraZeneca, dedicated to advancing options and providing hope for people living with cancer. More information at AstraZeneca-us.com.

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 heard a lot of things about how they felt so comforted and relieved that their oncologist wasn't keeping information from them. And all things that they had told the oncologist about, that person had documented. Like in the interval history, there was the story about how they were feeling and what was going on. And they felt that that often did really mirror the content of the discussion and the focus of that visit. So they felt like this is a team. I trust my oncologist, and they're not hiding anything from me. And that was an empowering thing.

One of the surprising things for me, though, that it's a little bit more nuanced and maybe doesn't come out as much in the paper as it could-- this is probably something that needs to be more of a focus of future studies-- is I got the distinct sense that many of these patients actually got a bit of a false sense of security from reading the notes. Like oh, I read all of these notes, and I Googled all the words. And so that means that I know everything about what's actually going on.

But then the way that they talked about their disease, knowing what stage their cancer was and what kind of treatment they were getting as well, as the investigator, I could tell that many of these patients really probably didn't actually understand their prognosis very well. And they thought that they did because they had been reading all the notes and working really hard to understand all of this.

So one concern that I do have is that it's not clear that increased transparency about the documentation really does actually lead to better understanding. People feel like they're more in control, they feel more trust, they feel like they know what's going on. But I don't know if they actually really have increased comprehension in a meaningful sort of way. And this is something that I think needs to be studied further.

It's very interesting when you think about this because of course, if every patient could just see the note, and the doctor, really, was just making it the way they normally would make it without thinking about a patient reading it, then maybe, in some ways, that would be more useful because the physicians probably knew that the patients were going to be reading their notes. And I wonder if that influences the tone of what they write. Did you do any interviewing of the actual doctors who documented the notes?

No. And you are absolutely right. This is actually the next thing that we're doing. So the next phase of the study is that we're interviewing some of these physicians. And it won't necessarily be paired up that it's the same doctors who are seeing these patients. But we really just want to interview some docs who have had experiences with their patients reading notes and get a better sense for how they feel about it.

I've certainly heard things anecdotally about it, and some physicians have said to me that their notes generate a lot of additional phone calls or inbox communications where patients can send a note directly to them to say, hey, you know that thing you wrote in your notes? That's not correct. I have not had that experience myself, so I don't really know what we're going to find, but that's the next phase of this work.

I mean, I know that because my patients can access my notes, I'm very conscious about some of the things that I say, to not be too speculative, or perhaps be a little more pessimistic in thinking about which way I might be leaning about a suspicious finding, and we're going to repeat a scan in a few months. And I understand now that if someone reads that, they could become quite anxious. So I'll be very curious to see what your results are when you start interviewing the docs.

Well, me, too. And one of the things related to this that I'm really curious about is whether any of these folks are actually restricting access to notes. Now this is something that's possible in some electronic record systems like the one that we use. And you can actually just type a dot phrase in a note that basically blocks the note from being made available to the patient. And I've seen at least one instance of this happen, but I don't actually know why a person would specifically do that, and if it's something that they do across their whole practice, or maybe only certain scenarios or certain patients. So I'm really curious about that.

This relates, too, t one of the other things that we found from this study, which is when we asked patients what they would change about the notes, it was really fascinating, although maybe not that surprising, to hear what they said. So for example, many patients complained that the notes were just really difficult to read because they were so repetitive.

And they noticed pretty quickly, they picked up on these patterns of our typical SOAP note structure in medicine that you kind of skip over all the junk in the middle, and that stuff mostly doesn't change. And it's really just the very beginning and the very end of the note that I care about. And now I just open this thing up and I zoom right to the bottom, and I read that piece because that's what matters.

And so patients said it really would be more helpful if these certain terms were explained, like if I could click a link when I'm reading the note and it would explain a medical word for me, or if the doctors wrote things in less complicated of a way. And it really opens up this difficult issue, I think, for discussion and debate, which is what's the purpose of the note and who is it for?

So when patients are now able to read these notes, which historically were really just for physician-to-physician documentation, and then increasingly to support a level of billing or to serve as a record for future inquiries if there were ever problems or medical legal issues, now the notes actually serve another purpose around communicating with the patient. And if so, should we be doing something differently?

And nobody knows the answer yet. But I certainly think we all have lots of ideas and could speculate about, maybe, how we could spend our time better when we're doing our clinical documentation, and how we might reinvent notes if we could start from scratch and weren't told A, B, C, D, and E has to be there to support your level of billing.

No, I don't think anyone would invent the current structure again if they didn't have to support the billing. That seems to be the primary reason for half the stuff that we write. And then at the very end, there's just the one summary of a few lines that actually is the meat that you're looking for.

And I think that's absolutely right. If the patients are going to be accessing this routinely-- and maybe this should be something that we should actually give to the patients or ask them to read, as opposed to just allowing them to peek in if they're interested-- that probably should be designed in a format that's designed to be accessible to them so they understand it.

Yeah, I really agree. And now that technology has advanced so much, even in just the last five years, thinking about how much more interactive medical records are how much more you can do now with these data, it makes you wonder if maybe something could even be done almost automatically with the clinical documentation that translates parts of it into a format that's more useful to patients, or even just pulls out pieces of it for them and avoids, maybe, some of the duplication issues and so on.

But I don't know. This is a whole new frontier, so it'll be exciting to see what happens. But certainly lots more work needs to be done in this area.

Yeah, and on that note, I mean you certainly mentioned your next idea of talking to the docs. But where do you think this is going to be going in the future in terms of research, or just the movement towards getting patients more involved?

Well, I would love for notes to serve a more active purpose in patients' care. So they still need to be there for us to communicate with each other. For a bunch of different consultants and physicians taking care of a person and their family, we need to be able to communicate with each other, and the chart is probably always going to be there for that purpose. We can't always just be emailing and paging and calling people on the phone, and there needs to be a persistent record. None of us can remember everything we need to remember about the many hundreds of patients we see.

But could we build upon that in a way that actually allows us to meet some of the unmet needs that exist in cancer care? So for example, we know that among patients with advanced cancer, all of the studies that have been done on this topic suggest that most actually don't understand their prognosis. And they might, for example, think that their disease is curable when really, their chemotherapy is actually being given with just palliative intent to help them feel a bit better or maybe live a bit longer, but really doesn't have a chance of curing their disease.

And despite the fact that we all talk with our patients about their prognosis and treatment goals, somehow many people walk away from those encounters fundamentally misunderstanding it. So could we actually use the electronic records and this idea of open access to notes to somehow enhance what people really understand about what's going on? Could we use it to transmit information about prognosis in a way that's more understandable, or information about the treatment that people are receiving, what the likely side effects are, when they really should call for help, what the goal of that treatment is.

So it would be like taking these kind of standard, boring old things, like handing people you know pamphlets or pasting in bland educational text about neuropathy from chemotherapy, and turning it into something that's more active, or more interactive, to thereby improve patients' understanding, and thereby improve their care and their participation in their care.

No, it sounds fantastic. It's a really cool paper. And when I first saw it, I was excited to be able to talk to you about it because I think people will be interested in hearing your thoughts.

And Tom, thanks so much for talking to me today.

Well, thanks so much for having me.

And I also want to thank all of you out there who joined us for the podcast. The full text of the paper is available at ascopubs.org backslash journal backslash jop. It was published online ahead of print, February 13, 2018 in the JOP. This is Dr. Nate Pennell for the Journal of Oncology Practice signing off.