HLOL Podcast Transcripts

Health Literacy

Patients as partners in medical education, practice, and governance (HLOL #218)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.

Today, I’m talking with Professor Jason Last, who is University Dean of Students at University College Dublin in Ireland.

Building on his experience as a practicing physician, Jason Last now leads and participates in many graduate medical education initiatives and programs. This includes his work in patient education and advocacy.

Jason and I are both advisory board members for a project called The Blood Project. We both share a strong commitment to bringing the patient voice to all aspects of medicine, teaching and health communication.

I am delighted that Jason agreed to talk about this with me on Health Literacy Out Loud.

Welcome, Jason.

Dr. Jason Last: Hello there, and greetings from Ireland.

Helen Osborne: You and I have known each other for many months now in our work on this other project. I consistently hear you talking about the importance of bringing in the patient voice and their lived experience. Why is this so important?

Dr. Jason Last: It’s a really good question. The importance for me stems, I think, from just a general feeling I had when I was growing up. I wanted to make a difference in whatever I did.

Then as I went through the various different educational episodes that we all have to go through, such as high school and university, I certainly held on to that belief.

I’ve watched other people, mentors and experts very successfully empower the patient voice. I’ve learned from that experience of growing with an empathetic view of the world.

Helen Osborne: That empathetic view, that carried you not only through your primary grades and through high school, but also in medicine, too. Right?

Dr. Jason Last: Yes, I think so. If you think about medical school, certainly in Ireland, medical school tends to be something that’s done straight after high school.

Helen Osborne: Oh, okay. In the US, you go to four years of college and then you go to medical school.

Dr. Jason Last: That’s right. That can still happen here. We just introduced what we call Graduate Entry to Medicine programs. But prior to that, it would have all been undergraduate programs in medicine.

I could actually start at the age of 18 learning how to be a doctor, and by the age of 23 or 24, become a doctor. It’s quite a steep learning curve, as you can imagine.

Helen Osborne: You talked about the importance of that empathetic point of view. For all the work you’ve done as a doctor and now as an educator and dean, how does that make a difference? Tell us some stories. Share some examples.

Dr. Jason Last: I’d love to. It’s great talking to you, by the way. My sense is maybe to start with the clearest example, which is the module that I had worked on back in 2008 called Understanding Disability.

I had no personal experience with disability, but there were members of my extended family that had disability.

Certainly, from the point of view of my medical practice, I had encountered quite a lot of patients who would have had a disability of one form or another.

The medical curriculum at the time didn’t actually contain very much information about disability. It would have contained sufficient to become a practicing doctor, but it wouldn’t have been the priority.

The curriculum was going through a development, so I had an opportunity to actually change an element of the curriculum. I put together a module called Understanding Disability for Healthcare Students. It was really to draw together in one place both the science behind disability and also the lived experience of disability.

For example, there would have been not only encounters with patients in our National Rehabilitation Hospital at the time, but there would have also been patients coming into the lecture room and delivering lectures to the students, which was great.

Helen Osborne: They bring their experience. A lot of education these days is about body parts. What goes wrong, what we can do about it, how we can measure it and how we can treat it. It’s not about the person behind all those body parts.

Dr. Jason Last: Yes, I think that’s a common problem. In fact, I think it’s the enthusiasm for learning all about the disease that the disease sometimes takes priority over the experience of the disease, which is essentially the experience of illness.

To give an example. We had a member of the deaf community who would come into the lecture and he would stand at the front of the lecture room in front of these maybe 300 medical students. Very brave man, I would say. He would stand there and gesticulate. For two or three minutes, this would go on.

Helen Osborne: You mean gesticulate with his hands, to gesture? Is that what you mean?

Dr. Jason Last: Yes, that’s right. Exactly. To make gestures, apparently randomly. The students didn’t know they were getting a lecture from a member of the deaf community.

Then two minutes in, the translator, who at the time was a wonderful colleague, Pauline, would then start talking. Pat Matthews was the name of the lecturer. As Pat would gesture, she would say, “What you’ve just experienced is what it’s like for a member of the deaf community day in, day out.”

Just that moment of two or three minutes at the beginning, that changed the atmosphere in the room. Suddenly, the students were engaged and they wanted to hear more, and so they did.

They would hear all about what it’s like to be a member of the deaf community, experience in medical practice, how there’s an assumption from those of us who are not members of the deaf community that being a member of the deaf community is all bad, and actually, how some of them would like the idea of being able to every now and then turn off their hearing aids so they can’t hear a thing. That could be a moment of peace for them.

These are the types of things that you don’t really understand from day-to-day patient encounters in health practice until you actually take the time to understand it. That’s the power, I think, of actually having the patient as the lecturer, as a partner in education.

In this case, of course, he wasn’t presenting himself as a patient. He was just simply presenting himself as a member of the deaf community. But he was representing individuals who would need from time to time to seek help just like everybody else.

It’s a series of those types of moments that we try to put together when we deliver that module.

Helen Osborne: Jason, what you were talking about, in Ireland people can start in medical school when they’re a teenager. Certainly, in any medical school worldwide, people are really smart to be able to get into medical school. They probably can’t even relate to what it’s like not to be at the top of what they’re doing.

At that very early age, unless they have some personal experience with someone in their family or themselves, they probably just don’t even have the maturity to bring that humility and humbleness that they don’t know everything right now, because they’ve been so capable and so successful.

Is that a component of what’s going on?

Dr. Jason Last: That’s really interesting. I used to give the first lecture, which is like an introductory lecture, and I would ask all of the new students, “Which of the current TV dramas that depict doctors do you think is the most like life?”

It was really interesting hearing their answers. Some would say, “It’s ‘Scrubs.’” Others would say it was “ER” or whatever. That was a nice way into the conversation.

Actually, quite a few of them felt that “ER,” which at the time was a big hit here in Ireland, was exactly what it was like. Of course, it was very little of what it was like from our perspective. “Scrubs,” I think, would have been much more like it. Being a doctor can be a very humorous thing as well as being hard work.

Then the next question I would ask them would be, “What is it that has drawn you to being a doctor?” In fact, we get them to fill out a survey. The vast majority, surprisingly a lot more than I expected anyway, every year, year in and year out, would say it was a personal or family experience with illness.

Helen Osborne: That’s interesting.

Dr. Jason Last: There were very few who were doing it to drive expensive cars. In fact, even the science wasn’t the key driver. I think it was overwhelmingly always, initially, about knowing somebody who’s been sick and wanting to make a difference and to make a change, and then, I suppose, translating that into the scientific pursuit, translating that into the types of thing we talked about and empathy.

One more thing just before I leave that point. The disability module that I mentioned, we actually did a study. I teamed up with some psychologists who know a lot more about studying this type of thing than me. They had a look at the module and tried to measure the change in attitudes that students had at the beginning and end of the module.

What they determined, perhaps unsurprisingly, was that there were improved attitudes toward people with disability. Obviously, people with disability were standing there and teaching them.

Then they also had a measurable change in some of the variables associated with empathy. It’s just that little bit more than we expected.

My sense going away from it, and since then, is that I think actually students arrive in universities all over the world brimming with empathy, brimming with all of the right and noble thoughts.

But what can happen is that the pursuit of science and the pursuit of enhancement, I think, can sometimes take over as a priority. We need to invest in training around empathy to remind students what they once had when they came in. It’s probably quite the opposite of what you might expect.

Helen Osborne: Boy, I’m so glad you’re explaining this some more.

Let me explain about the listeners of Health Literacy Out Loud. I think we also bring a very hefty dose of empathy and caring to all our work as well, whether we are clinicians, public health folks, educators or people in community organizations.

We all care about communicating health information clearly so that the other person can make a reasoned decision and take informed action about what they need to do.

But just like with your students, just like with doctors, just like with everyone these days, that can get lost. That good intent can get lost in that hubbub of day-to-day and all the competing demands on our time.

As you go about doing this, how would you address that, when people say, “I don’t have time to do this”?

Dr. Jason Last: None of us has time. That is true. My sense, again, is that it’s back to basics. Any of us that have taken time to go to a conference or taken time to do a bit of education, where you deliberately have to take a part of your day, set it aside, you can’t do anything else and you have to be there. We all get that feeling at some point during that moment where actually we realize how important it is to take that time where we’re listening to somebody and there’s a light bulb moment.

As an example, and not to concentrate just on that particular module, but it does remind me, I was standing at the back of the lecture theater when we had a speech and language therapist come in.

I listened to the whole lecture and I learned about communication ramps, which is something that I hadn’t actually learned about formally before.

I was practicing medicine at the time in a community hospital. There were some patients in the hospital that had some difficulty communicating, and I had made the assumption that their communication difficulty was an expressive difficulty and a cognitive difficulty, a mixture of the two.

Having listened to the speech and language therapist, the next time I was on duty at the hospital, I took some time with each of the patients.

But there was one patient who actually then started to have a conversation with me. Their conversation with me was made possible by simply a pen and paper. I would write some words down and they would select the word, and then yes/no type, that type of an experience.

Actually, that was the first time the patient had had a conversation with somebody in many years, and yet they had been capable of that.

Up until that point, people had made the assumption that the lack of the ability to speak was a lack of an ability to communicate. It was a particularly important moment.

If we all went through life assuming that whatever we learned in medical school or whatever we’re learning through practice is sufficient for us to do the job as best we can, we would be wrong.

We actually have to step out of what we’re doing. We have to listen and take stock and take time in particular, I think, to listen to patients. Then we’ll learn something.

Helen Osborne: I’m also hearing that you took a risk. You did something in a nontraditional way. Perhaps you never learned that you could just pass notes back and forth with patients, and that can be an effective way. You’re so busy learning the more formal, accustomed ways of doing things.

Dr. Jason Last: It probably sounds awfully ridiculous to those who spend their lives trying to put in place communication ramps. But my sense is that we each have these blind spots. If we can find them, acknowledge them and do something about them, then we can actually do things better.

Helen Osborne: I hear your laughter in this. I’ve gotten to know you and have such great respect for what you’re doing. You are at a very senior, faculty, professorial level at an important university now. When you are saying it’s important, I think people might be listening. I think that you have a big voice.

Jason, in all our work together, you’ve been talking about certainly being partners when we want to explain things about blood. That’s the project we have in common.

I know you also are dealing with your medical practice or medical education. You also talk about the importance of the patient voice in research and in governance.

Our listeners have a range of settings they could be in. What can any of us be doing? What tips and strategies do you have for us at whatever level we are in our organizations to be including the patient’s voice?

Dr. Jason Last: Firstly, I’m sure many of your listeners do some of what I’m about to say already, so forgive me if I’m actually preaching to the converted.

Helen Osborne: We can always learn something, Jason. You don’t need to be humble. There are goodies from everybody, and you bring a lot, so bring it on.

Dr. Jason Last: Some simple points. Point number one is to invite patients to partner in what it is you’re doing. I’m an educator, so it’s natural for me to try and invite patients to partner in developing the education.

But then take a step further and ask, “What role could a patient or patient advocate have in the governance of what you’re doing?”

I work for an organization called IPPOSI. In fact, I’m a non-executive director on the board of this voluntary body.

Helen Osborne: We’ll have a link on the Health Literacy Out Loud web page for that.

Dr. Jason Last: It’s a patient organization platform, but it also has membership from science, academia and industry, something like 102 different patient organizations.

Helen Osborne: Oh, it’s huge.

Dr. Jason Last: Yes. It’s quite a large organization. It is designed to try and promote the voice of the patient, not just in research and in industry, but also in the creation of policy.

I’ll give you one example, if I may.

Helen Osborne: Please.

Dr. Jason Last: There’s a really interesting project or initiative, which was around a citizens’ jury.

Helen Osborne: A citizens’ jury? Like a trial and jury?

Dr. Jason Last: That’s right. It’s kind of like a trial. This is actually based on a model developed, I think, in the US, by the way. I think this is maybe one of the first virtual citizens’ juries, because we had the pandemic at the time.

What IPPOSI did was they invited 25 individuals who would be members of wider society to be part of a jury. They lined up a number of government bodies and other industry representatives to then come and give evidence to the citizens’ jury over a series of digital data, as you might call them. Twelve hours later, the jury came up with a set of recommendations for government.

Because it had been set up in such a way that it was scientifically valid, using best practice and all of the things that you’d like, this provided a mechanism by which IPPOSI could then talk to government about what patient voice had determined at the time would be appropriate. This time, it was around the electronic health system.

Helen Osborne: Oh, okay. I just wanted to frame it. You’re not dealing with criminal juries. You’re dealing with the authorizing bodies for medical practice.

Dr. Jason Last: Yes. To put it simply, instead of thinking about it as a criminal trial, you think about what a criminal trial does. A criminal trial takes a series of laypeople, sets out the evidence in front of them and then gets them to make a judgment.

Here, the difference is you take a series of laypeople and give them a dilemma. This time, it was around the electronic health record. A series of experts comes and gives them all of the data they need. Then they get together and say, “What is it that we should be doing as a country with the electronic health record?”

Helen Osborne: Thank you. That’s very clear. You brought people into your governance. That was one of your tips, to invite people in. Is it hard to invite people in?

Dr. Jason Last: I’d like to just point out as well that this is a wider IPPOSI initiative rather than my own. But it’s a type of activity that elevates the patient voice and enables that voice to be used in developing either policy or other forms of governance.

Let’s talk a little bit about The Blood Project. This is a project which is aimed at developing education or resources that would be of use to those who are interested in blood, in doctoring around blood. It is also potentially of interest to a much wider community.

We can either start off in that project by saying, “If we think about that wider community, what do you think they would be interested in hearing?” or we could say, “Let’s bring in somebody representing that wider community from the beginning and ask them what it is that they believe we should be doing.”

Helen Osborne: You and I have been championing that for a long time. We’ll also have a link to The Blood Project, because it’s a great project.

Jason, we’re running out of time here. I just want to hear another tip or two from you. You’re giving these great examples about what listeners can be doing. If everything worked the way you wanted, what would we be doing?

Dr. Jason Last: The two areas to concentrate on, again, are to think about what your practice is and how that might be amplified. Maybe people are doing this, but it could be just simply regular surveys of patients using the facilities.

You might learn directly from the individuals who might be using a service or using a professional. There may be tips that they would have to help you communicate or to improve your service.

An example that I came across was simply lighting in your room. If you’ve got somebody who’s hard of hearing and has some potential to be able to lip read, then actually if you’re sitting in a chair with the window behind you and you’re silhouetted, that makes it just that little bit more challenging for that person with a hearing difficulty to actually understand you.

There are little tips like this that come from just inviting the client base or the patients to actually feedback.

Then the second tip is, where possible, have them represented in the management of what you do as well. Invite them in. Ask them to partner with you in helping to run something, whether that’s a project or, as I say, a service. It doesn’t really matter.

But involve them right from the beginning. Otherwise, you’re in danger of assuming that you know what will be appropriate to that area of the community that you’re trying to serve.

Helen Osborne: I assume you’re not doing that in just a way to check the box, saying, “I asked a patient.” You’re doing it in a very sincere, meaningful way that you’re both learning and creating together. Is that right?

Dr. Jason Last: It is. Just one more example, which comes not from my neck of the woods, but comes from the Medical Council here in Ireland. The Medical Council is a professional body that’s there to make sure that doctors do the right thing and that the education of doctors is done correctly. It’s quite an important body.

Recently, the act which governs the Medical Council was changed such that there would be increased lay representation on the Medical Council for all that it does.

For example, in fitness to practice hearings where it used to be doctors hearing about what doctors were doing, we now have a mixture of doctors and the general public.

What you might be surprised to know, certainly anecdotally, is that the general public representatives, the lay representatives, tended to be much softer on doctors than doctors themselves.

Helen Osborne: Really?

Dr. Jason Last: Yes.

Helen Osborne: That is interesting.

Dr. Jason Last: There you go.

Helen Osborne: Jason, listening to you, you’re like an infusion of empathy for us all and a great reminder. You say, “I bet your listeners might already know this,” but we all need a good reminder. We need a reminder not only about what to do, but why to do it.

Thank you so much for all you’re doing and for sharing it with us on Health Literacy Out Loud.

Dr. Jason Last: Thank you. It’s been a pleasure.

Helen Osborne: As we just heard from Professor Jason Last, it is so important to consider the patient’s point of view, that lived experience, in everything that we’re doing. But doing so is not always easy.

For help clearly communicating your health message, please take a look at my book, Health Literacy from A to Z.

Feel free to also explore my website, www.HealthLiteracy.com, or contact me at helen@healthliteracy.com.

New Health Literacy Out Loud interviews come out every few weeks. You can get them all for free by subscribing at www.HealthLiteracyOutLoud.com, or wherever you get your podcasts.

Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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