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–hearing what health literacy is, why it matters and ways all of us can help improve health understanding.
Today, I’m talking with Dr. Michael Pignone, who is a Professor of Medicine at the University of North Carolina Department of Medicine and Chief of the University’s Division of General Internal Medicine.
In addition to his numerous clinical and teaching responsibilities, Michael Pignone researches chronic disease prevention and treatment, physician-patient communication and decision making in primary care settings. Health literacy is a thread woven throughout all of Mike’s work.
Michael Pignone: Thank you, Helen. I’m glad to be here.
Helen Osborne: You are a long-time health literacy champion, you’re a clinician and you’re a researcher. Given all these many hats, what are you looking at when it comes to health literacy and patient education?
Michael Pignone: My interest in health literacy really stems originally from my patient care. Maybe I’ll just tell you an illustrative story.
I see patients here at the University of North Carolina. We serve a very diverse patient population, one that is both urban and rural, multicultural and multiethnic.
In doing so, I’ve had the chance to learn a lot about how to care for people with chronic illness. Most of my patients are on the older side, over age 65, and many of them have challenges related to health literacy.
I think probably of one patient in particular, I’ll call him Mr. D., whom I started taking care of when I was just starting my faculty role here about 15 years ago.
When I met him in his mid-60s, he had retired from a job with the state where he did maintenance work at one of our local state parks.
He had a number of health challenges, such as diabetes, heart failure and chronic osteoarthritis, but he was doing pretty well despite all of his health challenges.
In caring for him as he got older and faced more health challenges, it became very clear that he had only had the opportunity to go to about sixth grade in school and his reading skills were not great.
In addition, he was trying to manage a very complex regimen. He had probably 15 to 20 medications at the time and he had more than five or seven health problems that he was actively dealing with at once.
The struggle to help him make his health as good as it could possibly be was really the thing that got me interested in health literacy work.
It became pretty clear in caring for him that I couldn’t do everything myself. One of the things that we worked to do here at University of North Carolina was build a mulita-disciplinary care team.
Mr. D.’s success in managing his chronic conditions really comes from a team approach. We engaged a clinical pharmacist along with myself and our nursing staff and came up with a plan to simplify his care regimen somewhat and then to teach him in ways that he could understand his best approach to self-care that would be most likely to reach his health goals.
Mr. D. was an incredible man. He lived on a farm with his wife. He raised chickens and turtles and invited me to his birthday party every year. We had a big barbeque. He was very central to his community.
Helen Osborne: What I’m hearing from you is the respect you have for him as an individual and how much you care and help him care for himself. He sounds like a remarkable man. When we get to know their stories, they have such a profound story to tell.
Also, you countered this by how much he needs to do to take care of himself. You talked about 15 or 20 different pills or medications.
That’s what got you started. You internalized that wanting to help someone like Mr. D.
Michael Pignone: Yes. With him, I think one of the things was recognizing his strengths. He had a number of strengths. He was a very personable, honest man. When we had conversations, he would tell me exactly how things were going, what he was struggling with and what was going well.
He had a great social network, so we took advantage of his social network and his social support to help him and we used it to figure out a way to overcome some of the literacy barriers.
That’s really the basis for the work that we’ve done in diabetes and heart failure here. It was figuring out a way to take advantage of people’s natural strengths, overcome some of the areas where they might be more limited and then doing that in a context of what is actually quite complex care.
Taking care of diabetes and heart failure is not simple. Figuring out the best way to do those things was really a challenge that we were interested in undertaking in order to serve patients like Mr. D.
It was also to figure out a way to teach other doctors how to do this kind of care better.
Helen Osborne: Thanks, Mike. As I’m hearing it and taking a few notes, it sounds like it’s this triangle with recognizing a person’s natural strengths, overcoming where they have more limitations or some challenges and putting this in context of the complex care.
You’re looking at people like Mr. D. and many others like him. I know you’re looking at how we can teach.
Our listeners are not all physicians. Some physicians are listening I’m sure, but also they are all kinds of clinicians, people in medical settings and people in public health. What can you share with all of us about what we can do to help those we care about and care for?
Michael Pignone: First of all, I think it depends on the unique set of circumstances to each individual. Some of the things I’ve seen in common is that you have to begin with looking at what outcomes matter to patients.
When we were helping Mr. D., it wasn’t in order to improve a lab test or implement some care pathway that had been developed in California. It was really looking at what he wanted to be able to do, what we could do to facilitate that happening and then growing on the medical literature and what other people have learned and adapting it to his unique environment in order to make it work.
In some cases, we could draw on previous research that had been done, saying that if you use this regimen rather than that regimen people are more likely to feel less burdened from their medications, let’s just say. We tried to implement as many of those things as we could.
Then at a certain point, and this is where the research comes in, there are some decent ideas about how to proceed next and you don’t know which one is better.
Helen Osborne: I want to take you back just a little bit. You talked about finding out and addressing what matters to each person rather than just some lab level or protocol.
How do you go about finding what’s important to, keeping with the theme, Mr. D., and how might that diverge from what you traditionally might teach?
Michael Pignone: I think it can only be revealed in the context of a relationship. I could teach people techniques like using open-ended questions about how to do a single medical interview better, but what I can’t teach somebody, since they’d have to observe, is how a relationship develops over time. That’s something about the primary care relationship that I think is very special.
If I had one visit with Mr. D., I could try to do a good job, but I could do a really good job because I took care of him over time.
I honestly think that going to his home and knowing him as a person rather than as a patient also really enhanced my appreciation of all the strengths that he brought to bear in his life. It really just drove home to me his whole life context as opposed to “I’m here today for my diabetes.”
Helen Osborne: Just taking it from there, though, in reality maybe it works in your practice. Everyone tells me wherever I go, “I don’t have time. I’m in and out, seeing patients in just a few minutes.” Can that be done when people don’t have the opportunity to go to someone’s home and really get to know them as a person?
Michael Pignone: I think that is the extreme of building that care relationship, but there are things you can do in the limited amount of time that you have with a patient that help enhance it.
One of the things is having the physician do the things that only the physician does well and relying on other members of the care team to do the things that they do well.
In order to get that level of relationship and in order to build that level of trust, I needed time. Part of that time was generated by the fact that I have a whole care team working with me, such as a nurse and a pharmacist, who help deal with some of the things like “Mr. Davis needs a refill on Medication X today” so that I didn’t have to do all that work myself.
Care of patients with chronic illness has to be team based at this point with everyone working at the top of their job description, in other words doing the most fulfilling, most complex work that they are capable of given their training.
Helen Osborne: I love that term “the top of their job description.”
You know what’s important to Mr. D. You figured that out with him and you’re working with a team. What else can we learn from this experience and put into our own practices and worlds?
Michael Pignone: We took patients like him who were willing to engage in a little bit of dialog and willing to use their own experiences to help others. He was very generous in letting us take his experience and use it with other patients, who maybe didn’t have as much social capital and wherewithal as he did, to figure out how to care for patients with diabetes and heart failure better.
What we did was learn from his case and then asked, “What of this can be generalized to others?” We started developing a protocol for how we cared for patients with, let’s say, heart failure.
Then we said, “We think this is the best way to go, but let’s test it out.” My colleagues and I did a small study here at UNC looking at whether this kind of care plan for teaching patients how to manage their heart failure worked better than what was standard care at the time.
Once we had a promising care pathway, we wanted to test it in a larger group of patients, and that is where more formal research comes in.
We didn’t know whether a patient like Mr. D. would benefit from one session of self-care training or whether he would benefit from a longer series of encounters done with a combination of in-person and over-the-phone in order to teach the self-care skills.
Some people might argue that with someone like Mr. D. you could teach him all he needs to know in 15 minutes. It turns out that’s not the case.
Helen Osborne: That’s what your research found? Tell us more.
Michael Pignone: What we were able to do eventually was do a large, NIH-funded trial, both here at UNC as well as in Chicago and in San Francisco, looking at whether or not a series of multiple self-care teaching sessions with a patient helped more than one single good one.
What we learned in that research was that, for people who were vulnerable because of low literacy skills, they benefited a great deal from having multiple sessions of training, whereas the people who started with higher literacy skills seemed to do just as well with one session as compared to multiple sessions.
Helen Osborne: Wow. That’s really interesting on a lot of fronts. One is just how we allocate our resources.
You learned this, and I know from your work that there are multiple ways of teaching in there that happens over time, but if we as providers only have limited time and resources, who gets it, which way and how do we prioritize that?
Michael Pignone: That’s a great idea. Rather than offering, let’s say, every patient six sessions, I think what we learned from this work was that you could offer some patients, the ones that were probably most able to process information on their own, fewer sessions, like two, and you could offer people that needed more help even more.
Rather than everyone getting a one-size-fits-all curriculum, which is sometimes how things have been done in the past, we actually tailored the curriculum based on whether people had met certain learning goals or not.
It was only because of the work with people like Mr. D. and our preliminary work that we did here that we had an idea about what those learning goals should be.
It’s really an iterative process where you figure out what the key elements of self-care are. If you look at suggestions for what people with heart failure should do for their self-care, there’s a list of about 35 things, but not all of them are crucial. Some of them are nice to have and some of them are crucial, so we really honed down to the crucial ones.
Helen Osborne: You work with him, his goal, how he learns and what’s crucial and brought a team in there. Then you studied this.
For our listeners, is there a way we could read this study ourselves? We’re not going to go through all of the details of that and I know you’re a well-published author. Do you want to just tell us the name of that study, please?
Michael Pignone: The name of the study is a little bit of a mouthful. It’s “Multisite Randomized Trial of a Single-Session Versus Multisession Literacy-Sensitive Self-Care Intervention for Patients with Heart Failure.”
Helen Osborne: You got it right. It is a mouthful. We will put that on your Health Literacy Out Loud web page with a link. Thanks for that.
Michael Pignone: That’s great.
Helen Osborne: One last area I want to get to with you aside from what you learned is why you studied this. You and I have had some conversations like “Is research over at this end of the scale and practice over here?” When do they come together?
Also, tell us more about your views about that intersection of research and practice.
Michael Pignone: I think it really comes back to people like Mr. D. In order to serve him well, I’ve got to be present in the encounter and looking at his goals and his unique environment, but I also have to be able to bring to bear the best available medical information.
At a certain point, we’re going to have questions that we can’t answer just based on our own common sense. We need to have good studies that say Option A is better than Option B for people like Mr. D.
I love working at the intersection of practice and research. Every time we answer one question with research, we generate three more, so it isn’t like questions go away. They just change in nature.
We answer some things, we make some things easier and we learn about others. That’s one of the things that have kept me going in this work. There’s always a new challenge.
That sense of challenge is refreshed by my patient care. Every time I’m in clinic seeing patients, inevitably a question comes up that not only do I not know the answer to but no one knows the answer to it, and that just goes into our bank of things that we’d love to study.
Helen Osborne: I’m being candid here a little bit. I’m a clinician myself. I’m no longer in practice, but I talk to people who are in practice. I read a lot of research articles and, honestly, I get frustrated sometimes because the ending always says, “And we need to learn more.”
I am so hungry to know what we can do today. I can’t wait for this next big-scale study to come out. What would you say to people like me with this frustration?
Michael Pignone: I think your frustration is well placed. If a study concludes that we haven’t learned anything more and we just need to do more research, that’s probably not a good place.
For instance, in this study we learned some things that I think we can be pretty definitive about, like who needs what level of self-care training for patients with heart failure.
We can answer several questions that we couldn’t answer four years previously, but there are always more questions beyond that to be answered.
Do those questions preclude us from taking advantage of what we’ve already learned? No, not at all. In the inevitable pace toward giving better care, we learn some things, we check some boxes off and we keep going.
I think we’ve done better in the last five to 10 years of synthesizing what the collective research has shown. In the field that I work in, in primary care of adult patients, we are so much better equipped to help patients reach the goals that they have for themselves than we were 15 years ago. It’s quite remarkable.
That said, the research enterprise in the United States is not inevitably patient centered. It’s meeting a whole bunch of different goals, some of which are the goals of providers and some of which are the goals of industry.
I wouldn’t for a minute say that the research mechanism is perfect, but I think the research process, when used well, can help generate helpful information for patient care.
Helen Osborne: Thank you for countering some of my skepticism and cynicism about research happening over there and practice happening here.
I am just so inspired hearing you and others about how this research can really help us be better equipped to reach our goals. All of us doing this health literacy work care so much about clearly communicating health messages with Mr. D. and everybody else we care for and care about.
Mike, thank you so much for doing all you do and sharing just a little bit of it with us on Health Literacy Out Loud.
Michael Pignone: My pleasure, Helen.
Helen Osborne: As we just heard from Dr. Michael Pignone, it is so important to teach in ways people learn and to recognize what works and what doesn’t and learn from those who have done this before.
Health literacy isn’t always easy. For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you’re there, sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.
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Until next time, I’m Helen Osborne.