Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some really remarkable people. Today, I’m talking with Dr. Alex Federman who is an aging-focused, health-services researcher at Icahn School of Medicine at Mt. Sinai.

His research addresses chronic illness self-management in older adults and focuses on health literacy, cognition and health-related beliefs.

Dr. Federman also provides primary care to adults in both clinic and home-based settings in New York City.

I wanted to do a podcast about electronic health records and Cindy Brach of AHRQ suggested I interview Alex Federman about his research on After-Visit Summaries or AVS. Thanks, Cindy. I’m happy to be doing just that.

Welcome to Health Literacy Out Loud, Alex.

Alex Federman: I’m very happy to be here.

Helen Osborne: Older adults and chronic illness, how does that fit together with electronic health records and AVS?

Alex Federman: Patients are coming into contact with the healthcare system in many different ways these days. Electronic formats are an increasingly important part of the interface, whether it’s a physician at a computer taking notes if he or she interviews a patient during an exam or if it’s a patient tapping into their health information via an electronic web portal.

Helen Osborne: It’s interesting. I was at the doctor yesterday and both of those things happened. Are electronic health records two way?

Alex Federman: Yes, increasingly so. The use of the electronic portal is gaining ground as a way for patients to access their health information and to exchange information with their clinicians.

My particular interest in all of this is a little bit of a side product with electronic health records, and that’s the after-visit summary.

Helen Osborne: Could you explain what those are? Also, Alex, we’ve got an international audience. We’re not all physicians. We might be clinicians, public health, librarians or people just interested in communicating health information more clearly wherever they are. What is an after-visit summary?

Alex Federman: The after-visit summary is also sometimes called the clinical summary. Basically, it’s a summary of information regarding the visit that just occurred, whether it’s a doctor visit or a visit to a nurse or nurse practitioner.

Typically, this is a document that is generated from the electronic health record and it pulls information from various elements of that visit.

It might have information about the patient’s vital signs, medications that they take, the problems that were discussed during the course of the visit and specific instructions that the physician wants to have the patient follow.

Helen Osborne: At least in my experience, when I leave my encounter with the doctor and before I walk out to the waiting room, somebody often just hands me a few pieces of paper stapled together. Is that what the after-visit summary is?

Alex Federman: It might be. There are a lot of different pieces of information that people sometimes get when they leave the visit. Increasingly, the after-visit summary is a component of that.

Your confusion about what exactly is in that packet of papers that you get when you leave the office is actually part of the problem and the reason why I’ve become interested in this area.

Sometimes, patients don’t know exactly what they’re getting and don’t know that that packet of paper contains important information about their visit and the follow-up steps that they need to take.

Helen Osborne: It’s interesting that you talk about the problems, because in theory, it sounds like, “Isn’t that wonderful? I’m going to look at the same thing you were looking at as my doctor. I’m looking at it as a patient.” The problem is that I as the patient have no clue what to make of this document. Is that one of those problems?

Alex Federman: Not for everyone, but for some patients that is the case. It has to do with the language that is sometimes used on these forms and the way it’s formatted. There are a number of problems that underlie the fact that we don’t have an ideal after-visit summary.

There may be some out there, but by and large, the many after-visit summaries that I’ve looked at and in my many conversations with physicians across the country, I have learned that after-visit summaries that are generated from their electronic health records haven’t quite been optimized for the needs of the patient.

Helen Osborne: Give us an example. You talked about formatting and language, but what would that be like? What would it look like? What would it read like when it’s not all that useful?

Alex Federman: Very often, what we see on the after-visit summary is a document that is densely packed with information. Much of it is of immediate relevance to the patient. Other information may not be so immediately useful.

By immediate, I’m talking about instructions that the patient should follow, say, for starting a new medication or steps that they ought to be taking as soon as they get home.

Helen Osborne: That would be on there.

Alex Federman: Yes. Less immediate information might be background information, such as the immunizations the patients have received.

That’s all important information, but sometimes when you fill a document with a lot of that background information, it can distract from the information that needs more immediate attention. That’s one source of problems.

Another problem is that the language is typically not always tailored for its particular audience. The electronic medical records pull information from the notes and the charting template that the clinician is using.

The clinician is using terms that are familiar to him or her or filling in diagnoses that are very precise because they’re used for billing purposes. That’s the information that ends up on the after-visit summary, but it may not be language or terms that are familiar to a patient. Very often, it’s not.

Helen Osborne: Wouldn’t an example be when the doctor and patient talk about high blood pressure, but the coding or whatever comes in that after-visit summary would be some version of hypertension and maybe even a longer word than that?

Alex Federman: Yes. An example might be Type II Diabetes with neuropathic pain. It could be a diagnosis that has eight to 10 words. Maybe 10 is an exaggeration, but eight is really within the realm of possibility. The patient doesn’t necessarily need to see all of that and it might be easier for them just to see that term Diabetes, Diabetes Mellitus or Type II Diabetes.

The basic idea here is that there is a lot of terminology that is really part of the clinician’s jargon that does not necessarily resonate with patients.

Helen Osborne: It’s not just for me, as the patient, to get something useful because I’ve got pages and pages of this. Was it created to meet both the needs of the providers as well as patients on the same piece of paper?

Alex Federman: I think to a certain extent, because patients do share these documents with other physicians. In the focus group work and individual interviews we’ve done with patients, we’ve had many patients say that they actually keep these documents on their person in case they end up in the Emergency Department somewhere. They use it as currency for exchanging information between physicians.

Helen Osborne: Is that a good idea?

Alex Federman: Yes, it’s a great idea.

I think that the main purpose of the document is to inform the patient. The problem is that the technology hasn’t quite caught up with that particular need. The majority of the companies that are generating these electronic health records that are generating after-visit summaries haven’t yet been able to introduce a technology that is needed to translate that physician-focused information to patient information.

Helen Osborne: It’s not just up to you. In your practice wherever you are or whatever clinic you’re working at, you can’t just decide, “We want to do it this way.” It’s a bigger issue than that.

Alex Federman: There is a little bit of flexibility, but not a tremendous amount of flexibility. There are real barriers to being able to create a document that is really easy for patients to use and to grasp the information that they need. The technology isn’t quite yet there.

Helen Osborne: It says to me, listening to you describe this and certainly in my own experience, that this idea came from a good place. It’s the best of intentions. All clinicians and patients communicate better together and are more open about their care. But it sounds like there are some hurdles. Thanks for describing those.

We’re not there yet. We’re not at the ideal. Is it an either/or situation where it either works or it doesn’t, or is there some middle place that we can make this a bit better? By “we,” I mean all of us who listen and care about health communication. Can we make this a little bit better?

Alex Federman: Absolutely. Despite the shortcomings, many patients tell us that they find a great deal of value in the document. They would like to see a number of changes, but they otherwise value it.

Helen Osborne: That’s what your research is about, right, because you’re talking about doing the focus groups?

Alex Federman: Yes, we are doing focus groups and based on our focus group findings, both with patients and the clinicians, we are working on some prototypes. We’ll be testing those prototypes on patients to see how it affects their experience with care.

Helen Osborne: I’m delighted you’re doing that research. No wonder Cindy recommended I talk to you.

What can we be doing right now? Have you learned tips and strategies that all of us can be doing to make this a bit better today?

Alex Federman: Yes. If you’re a clinician, for one, there’s typically an opportunity, before printing the after-visit summary, to include some custom language or free text. Clinicians will often take advantage of that and type in some extra instructions for patients.

Helen Osborne: That might be a time to use some lay language. We could go back to Diabetes or high blood pressure or some lay language like that?

Alex Federman: That’s exactly right. Whatever instructions that they are going to put there, they should be mindful of the strategies that you and I know pretty well to effectively communicate using printed materials. Keep it clear. It’s the typical low health literacy or limited health literacy approaches to communicating information.

Beyond that, because these documents are unwieldy, too long, too dense and, again, with the information being difficult to understand because of jargon and the other formatting elements that can also make it confusing, what the clinician can do is actually take the document with the patient and highlight the areas that they think are most important by circling them and using it as a reinforcement tool.

Many clinicians do this already, but there are many who don’t take advantage of it. In a way, it’s a little bit of a wasted opportunity, because reinforcing key aspects of the visit does have an impact on patients’ retention. It’s just another way to ensure that the patient understands what you want him or her to understand.

Helen Osborne: That really gets me, if someone would have just sat down and talked to you about it. I just got it on my way out the door and that was the end of the conversation. I can just see that conversation.

One of my favorite health literacy tools is a highlighter. Highlight what’s most important. Maybe it’s the person’s weight, change, medication or something. That’s a great idea.

What other tips can you give any of us, whether as patients, family members, clinicians or anyone?

Alex Federman: One thing that I’ve learned from talking to so many patients is that they find a great deal of value in the after-visit summary as a way of clarifying for themselves some of the information that they’re getting from their clinician.

One of the downsides to these documents is that often you get information that’s in the record but is no longer pertinent to the patient’s current state of health.

That might be because the clinician hasn’t, for example, eliminated some old problems that exist on the problem list, or maybe they haven’t removed some medications from the medication list that the patient is no longer taking. That’s just part and parcel of being a busy clinician.

One of the problems with the electronic health record is that this constant upkeep that’s required is extremely time consuming for the clinicians.

Helen Osborne: I print out those things and I keep those things. What I as a patient did was I actually made notes about which medications I’m not on anymore and brought it to my next visit.

Alex Federman: That’s one of the things that patients find valuable. They recognize, “Should I really be on this medicine? Do I still have this problem?” Many patients, I’ve found, actually bring this up with their physicians which stimulates that conversation. My sense is that it leads to clarification of the medications that the patient is taking, so that’s an opportunity for reinforcement.

I guess that was a longwinded way of saying that patients should take a look at this document and make sure that it looks like it’s up to date. If they have concerns about it, then do what you suggest. Circle it, highlight it and bring it back to their doctor to clarify.

Helen Osborne: That really brings full circle that issue of health literacy. My understanding of it and the way that I view it is it’s all about mutual understanding. Yes, the clinician can be taking the highlighter and updating the language, but we as patients can be doing the same. It’s when we come back together with that shared understanding that health literacy really happens.

Alex Federman: That’s right.

Helen Osborne: Thank you for doing all that research on it. Putting this all together, if there was a scale are these after-visit summaries and electronic health records in your view good, bad or somewhere in between?

Alex Federman: They’re great.

Helen Osborne: That’s good. Problems and all.

Alex Federman: They’re all great. There is always room for improvement. The electronic health record introduces a lot of challenges for clinicians. It’s more documentation than we used to have to do, but I think it also helps us improve the delivery of care.

The after-visit summary is just another tool for effectively communicating with the patient. It hasn’t been optimized quite yet, but in its current form, it still has plenty of value. I think there are a lot of good reasons to keep working on it to make it something that both the patients and the physicians really love and want to use.

Helen Osborne: Thank you for making it more clear what this is all about and also for championing this. When you just responded, “It’s great,” I could really hear that from you. It is a tool and we need to keep working on it. Thank you for doing the research and for helping us move forward for this. Most of all, thanks for being a guest on Health Literacy Out Loud.

Alex Federman: My pleasure.

Helen Osborne: As we just heard from Dr. Alex Federman, health literacy is all about patients and providers understanding one another. But doing so is not always easy.

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Until next time, I’m Helen Osborne.

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