Health Literacy with Dr Graham Kramer

Health inequalities in Scotland are worsening. In this episode we hear from Graham Kramer, retired GP who has dedicated much of his career to promoting health literacy. Here he shares with us what health literacy is, why it is so important and how we can all describe it and improve health related understanding.

Show Notes

Kate: Welcome to the Realistic Medicine Podcast. We are taking full advantage of Health Literacy Month, and we are delighted to welcome Graham Kramer here to talk to us about about health literacy. So I'll start by introducing myself and Kate Arrow. I'm the clinical lead for realistic medicine in Highland. And then thanks so much for joining us. Graham, can you tell us a little bit about yourself?

Graham: Yeah. Thanks, Kate. And thanks for inviting me to take part in this. I'm a recently retired GP. I retired August last year, having spent most of my career as a GP in Montrose on the East Coast in Tayside. And I suppose I spent a lot of time in general practice with a big interest in people living with long term conditions. And for a few years in the latter half of my career, I was seconded to Scottish government as a clinical lead for self management and health literacy, kind of terms that are slightly confusing and people struggle to think what those might mean. But at the heart of it, it's really enabling and supporting people to be the sort of lead partner in their care, because we know that when people are the lead partners, when they're the active agent in their encounters with healthcare professionals, often health care outcomes are better, people make better decisions relevant to themselves when these sort of things happen. So there's a big political economy around supporting people to self manage, and a key ingredient to that is people being able to understand and engage in their own health and health care. And that's where some of health literacy comes in. And this is very important.

Kate: Grand yeah, because it's a term that we talk about a lot. And it became clear to me recently that not everyone fully understands what health literacy means and how they can improve health literacy. Can you kind of explain to us what it is from a clinician point of view and maybe from a patient's point of view?

Graham: Okay, that's interesting. I think there are sort of a few definitions of health literacy, and I just recently reading a paper, which was a whole paper discussed to sort of teasing out the various definitions of health literacy. It's really complex and I thought it would be disingenuous, but I think some of these are very good definitions. But I would argue that they suck. And I mean suck as a Mnemonic with S standing for skills, u standing for understanding, c for confidence, and K for knowledge. I think fundamentally, health literacy is about people having the skills, the understanding, the confidence and the knowledge to do what? To access and navigate the healthcare system, to be able to collaborate with their health care professionals, and I suppose, finally, to be able to self manage their own health and their health conditions in the way that they would want to necessarily force our treatment, some people. So that's sort of I think a light way of understanding that it's just remember the mnemonic suck skills, understanding, confidence and knowledge. There is a problem with these definitions because they often locate the problem with the person. So we might argue that people have insufficient skills and understanding, confidence and knowledge. And I suppose there's this great temptation to sort of really try and improve that, improve their skills and understanding and give them knowledge and things like that. And that's very important. But it's also a challenge for us to make healthcare much more easier to understand and more accessible and easier to engage with. I guess sort of in the evolution of the development of health prevention, health promotion, particularly in the old days where perhaps the biggest health problems were infectious diseases, communicable diseases, and health education was really important. So health literacy sort of was conflated a bit with health education. Now I think we're moving where people living with long term conditions. It's not really just the responsibility of public health teams. It really impacts us clinicians on how we engage with people and the onus for us to make healthcare much more understandable and engageable. The analogy, just a brief analogy that I've always used often tell this story, is 40 years ago, none of us had any computer literacy. We didn't really understand how computers work. And of course, IBM produced the first computer, which was this massive clunky thing which would have filled half your living room. And you would have had to have been an uber scientist or a geek to really want to be able to engage with one of these. And of course, what the computer industry could have done is they could have educated us all. They could have given us books and pamphlets to read about how to use these computers and how to code. They could have sent us off to evening classes. But in fact, what they did is they made computers a lot more engaging and simpler to use. And now, whether you're five or 85, using an iPad is so instinctive. I guess that analogy is how can we shift health and healthcare and the services we provide to be less like an old IBM computer and a bit more like an iPad, which people can engage with? So that's a useful analogy and hopefully that's sort of helpful overview of what health issues about.

Kate: Yeah, and when you say that, that resonates with me because the mnemonic that you talk about often as healthcare professionals, it's so easy to slip into Jargon and having the confidence and the knowledge on how to explain things in a way that people understand and within the confines of the time that we have to explain them can be incredibly challenging. I wrote all my letters to patients now, and it definitely takes practice and I'm sure I make mistakes in it.

Graham: I think that's a really good point. The thing about Jargon is these are terms that us healthcare professionals are so familiar with. We don't even know their jargon. We don't even know that the other person doesn't understand them. We do have to be very careful and it works some ways because sometimes if you try and oversimplify things for people and avoid jargon completely, some people feel at risk of being patronized. So I think perhaps the safest thing to do is it's okay to use jargon, but as long as you clarify that jargon, I'm just going to go and get my Glucometer. That's the little machine that I use to test your blood sugar and things like that. So use the words and then people pick these things up. And I guess in your case of point, if you are writing a letter, you can use the technical work but then put a bracket in as to explain that or have a little glossary at the end of something like that that explains these things.

Kate: Even translating terms between specialties can often be difficult because having an awareness that acronym in your world of anesthetics can mean something completely different in obstetrics. Yes, there can be a lot of confusion there, too.

Graham: I remember one little story, this is quite a case in point, actually, where people, when they go into hospital, acutely ill, and then they come out of hospital and they used to come and see me and I used to ask them, do you understand what happened to you in hospital? And it was surprising how many people didn't have a clue what happened, particularly of the sort of elderly. And I remember going to visit a nursing home and a little lady and the nursing home got a copy of the discharge letter and the diagnosis on it was non STEMI, which is a non St elevation myocardial infarction a heart attack. I went to see her with the carers and the nursing home and I said, how are you getting on after your heart attack? And none of them knew she had a heart attack. The patient didn't know that she'd been in with a heart attack and the carers had no idea because they know what non Stem meant. So we do have to be careful.

Kate: Yes, absolutely. So we can't assume that even our colleagues understand what we're talking about in our little bubble of our specialty. Absolutely. I mean, you've probably already alluded to it a little bit, but can you share the story of what really motivated you and to take this interest and do all this work around health literacy?

Graham: Yeah, I suppose I often tell the story and it really was sort of a light bulb bone and epiphany, really. I've obviously been seeing patients for many years and doing long term condition reviews with them and things. Anyway, one day I was out on some home visits and I came into the surgery, into my consulting room, and sitting in my chair at my desk was Ray, who was the taste side GP, It technician who went around servicing all our computers and updating them, upgrading them, and he often did that. And so he was in my chair and so I sat down in the patient chair and we kind of slipped into this role play. And I said to Ray, I said, common doc, how is it looking at the computer? And he began to tell me and all the things he'd done to it and the program files deleted and rebooted and everything. And it was absolutely I could get some of the words, but it was really gobbledy, really strange. And I found myself sitting there looking intelligent and nodding and taking it all in because I was kind of polite. I didn't want to say, I haven't got a clue what you're saying. And I suppose I was too embarrassed to sort of admit my own ignorance. And at that point I just thought, oh my God, this is exactly what it's like for my patients. And then I began to test that with them and lo and behold, conversations that I'd had over and over again with people, I'd realize that when you check their understanding, they haven't really taken in these concepts. It shouldn't really come as surprised, actually, because there has been research done, and this was in clinics quite a few years ago, in hospital clinics, that about half of what a person hears in a consultation is forgotten. So misunderstood. Half of what they've taken misunderstood, and of that half that is understood is easily forgotten. People are going away from these clinical encounters, often get very little out of it. Some getting a lot out of it, some getting very little out of it. Actually, when you think about it as a form of communication or education, as a vehicle for communication, it's quite ineffective. And when we're having 20 million consultations a year in general practice, 4 million consultations in hospital, there's a lot going through SIBs here and very inefficient. And I just thought, we've got to find ways of improving this. And so that was a kind of a motivator for me. Absolutely. And I guess the point of that is that the thing about health literacy or people's knowledge, confidence, understanding of skills is as clinicians, it's a kind of hidden disability. And people like me, with Ray, with the computer, we're actively disguising the fact that we don't understand. It's kind of shocking. One sort of take on health literacy is regarding it as a social disability. Really, that people, if they have functional literary problems or numeracy problems, that's a big issue. But if they just can't understand the information we're getting, well, they can't access health care. It's too complicated. It's a real disability for them. But with other disabilities that we can see, we actively do something about. And I always say that people with poor health literacy view health care in the same way that somebody with a physical disability in a wheelchair would see a world full of staircases. It becomes difficult for you to contemplate, difficult to engage in, and you don't you just stay at home because it's just too much for you. But because people in wheelchairs, that's a visible disability and we do something about it. We make everything disabled access much easier for people to get around, and we remove all those huge barriers because it's the right thing to do. But somehow with healthcare for USY, because it's hidden and we don't realize we inadvertently we don't mean it, but we inadvertently put all these barriers in place, often the barriers that we can't actually see. And it has a profound effect on people if they have poor health. Auto Sea there are some alarming statistics. There was 43% of working age adults in England are unable to understand the instructions on a childhood parasitamol packet or bottle because the wording and the numbers is pitched at a level that's above people literally in numerous skills for a lot of people, and that's just childoparacetama. When I think of all the other sort of complex drugs for trexat and morphine and all these things that we describe and the sad thing is that people with low health literacy have there's a good sort of rule of thumb that they really have twice the mortality and morbidity. So if you've got diabetes and very low health literacy, you're twice as likely to develop heart disease and failure and things like that. If you're over the age of 50 with anything and you've got poor husband, you're twice as likely to die over the next ten years. The economic cost of this in people sort of, I suppose, not being able to take the drugs as prescribed, increase use of health care services and e attendances and these sort of things, it's a huge cost to our economy as well. So it's a really big problem.

Kate: So how do we spot the people? How do we measure health literacy?

Graham: Yeah, and that's very difficult. And there's some argument that actually with the person that you have in front of you, do we need to know what their health literacy is? There's one argument that we should take a sort a of universal precautions approach. Just assume that they have low health literacy and don't use jargon and try and make things easier for them as much as possible. And that's quite good practice, really, because sometimes it might be quite shaming for people if we start, I guess, making assumptions about their house literacy. So that's quite a useful thing, this sort of universal precautions approach. And we shouldn't assume just because you might have people who are very high functioning university academics, you shouldn't necessarily assume that they understand what you're talking about. I remember talking to somebody about very high functioning civil servant, Cambridge graduate, and I was explaining renal patient view, which is where people can access people with chronic kidneys can access all their numbers and we have very good conversation about that. And then at the end of it she said, Graham, what does renal mean? We just mustn't assume it. Back to your question about how do we measure it with the individual patient. Maybe we should avoid measuring it. But I think what's really important is to check people's understanding and this is a really good practice. I think if you're seeing somebody. Maybe somebody has been referred up with a new diagnosis of diabetes or something. Just ask them before you even start. You know. What do you understand that diabetes is? And you'll get a clear idea from their explanation of it, where you need to start and where you need to begin and how to approach that. So I think that's a really important thing to do. The other thing to do is once you've had a consultation with somebody, I think the important thing is then is to check their understanding as well. And we often talk about this process of TeachBack where you get the person to say, because I'm not very good at explaining things to you, can you just tell me what you've understood and what we can get out of it? And that's a great way. Often it's a very good feedback about your own consultation skills and how good you are as a communicator and often people get it spot on and that's really reassuring, but also it's really helpful because it does clear up any misunderstandings and means the person is not leaving you going out with completely false ideas, which can be really dangerous, so that can be helpful. People say that takes time, but it saves time in the long run, so it's worth investing in that.

Kate: That really rings true with me. I remember I heard a talk from a lawyer about sort of legal aspects of medicine and I really didn't understand a thing. And what I did though was I then went to look up what it all meant and that's probably the danger as well. If we don't give information in a way that people understand, they go to their alternative sources which might not be true or credible, and they can go down that Google rabbit hole and then that leads to so much anxiety and more ill health around and you can see how the cycle goes.

Graham: Yeah, absolutely. I just forgot what I was going to say. I was also going to flip that round, actually. I think it's really important that we encourage or we demonstrate that not only we're very keen to know that the patients understood us and heard what we've had to say, I think it's really important for the patient that they feel that we've understood them as well. I kind of think about this reverse teach pack or summarizing. So if patients been telling you their problem, say, look, if I've understood you right, I think this is what you're saying. This and this and this and that's really important because we can label under misunderstandings about their mis assumptions. And so that's really important. And of course, I think the important thing about that is they feel that they've been heard and understood and that's really important in building trust in a relationship. And trust is fundamental, particularly well for any relationship in the therapeutic relationship. It's really important. And perhaps the cornerstone of shared decision making is building up that trust. So that's really important.

Kate: Yeah. Up here in the Highlands, we've got this sort of added issue where we have big rural sort of small rural populations, but very disparate. And when we look at the index of deprivation across Scotland, they're often some of our more deprived populations living further away from services. So we're communicating with them potentially more with near me, with phones. What are the things that we can all be doing to improve that interaction?

Graham: Okay, that's a very good question. Perhaps one of the first things to do is to obviously engage with our patients about what would make it easier for them as well. So if we can design the delivery of our services through the lens of the patient, then that would be a huge advantage. I know you've done a lot of work around that, Kate, when you're in Tayside and encourage them to tell you what would make it easier for them, or encourage them to tell you what was impenetrable and what they couldn't understand. That's the first thing. A key thing, I think is, as I said to you, the consultation we have is such a poor vehicle for exchange of information and patient education and these sort of things that we feel are important, but a way it can be vastly improved is through preparation before the consultation. So one of the stuff we do around sort of involved with around people with long term conditions is normally they're coming into a consultation and we're telling them your weight has gone up and your blood pressure is a bit high and your sugars increase. And it's very difficult for them to take in this information, particularly when we're giving numbers and expecting them to sort of come up with some ideas about what they're going to do about it. It's really impossible. But if you give that information to them before you have that consultation so I think your letters are great and in fact. Perhaps giving them some idea of what's going to be discussed. Something that they can think about giving them. If you do send the results out to them and give them some white space so they can write down the things that are important to them. Matter most to them. Sometimes you sort of prompt them as to what they might want to talk about. Especially with people like diabetes. Do they give them permission to talk about erectile dysfunction? Giving them permission to talk about their housing or their problem with their benefits because all these relationships, because all these will seriously infect their diabetes and give you some context. You might not be able to do anything about them, but it gives you a lot of context. It's really useful. So that bit of preparation and there's amazing a difference that makes. When we started doing that for patients, I used to get people coming in and you've given them their results for the first time in years and they've had time to look at that before they come in. Surprising things they say, well, what is this HBA one C then? Which is amazing because you've had that conversation with them for years and you thought they've taken it in, but they haven't. And so suddenly they highlight that and it's great if you do send them a letter that they don't understand. They can maybe share it with somebody in the family who might be able to understand it. Or at least they'll come back to you in the clinic and say, look, I didn't really understand this. Perhaps you can explain. And that's a productive way, your productive bit of time, you've really identified what the areas that they don't know, the unknown, unknowns and all that. So that's a really helpful so I think a key thing is for all of us as clinicians, if we're running clinics in general practice or whatever, is stop and think and think about how we can front end these consultations with some preparation for the person. That's a real useful tip.

Kate: Even just from the point of view of understanding how long they'll be an appointment. I think we get a lot of patients who come through a kind of one stop shop of a short notice surgical clinic and then they come for their anesthetic pre assessment and they've not come with the preparation of knowing that they'll be there for the whole morning and maybe bring a snack and a drink. Yeah, as well. These are the kind of things that we might discuss and these are the terms you'll hear. And please feel free to interrupt us at any point if you don't understand what we're talking about.

Graham: Yeah, absolutely.

Kate: I think sometimes we don't. There's lots of evidence out there that talks about how much we talk as doctors and we don't give people room to even interrupt, to ask a question. And I've been an advocate for a family member before who's received a monologue of technical information about a baby in neonatal ICU. And I found it hard to keep up. And there was absolutely nowhere that I could have politely interrupted him to say, could you explain what vent and adrenaline. I've always wanted to do this thing where I give a patient a yellow card almost to hold up if you don't understand something, just hold it up just to overcome that stream of words which can be impossible to politely interrupt.

Graham: Yeah, I think so. I suspect if I learn one thing over my career, I find it very difficult to practice it, but the time in a consultation for us trying to understand the patient and what matters most to them is probably better time spent than trying to understand me, actually.

Kate: And that's great. And so you've given us so many tips, which I'm going to go away and put into action immediately. But what would be like your one take home message? Like, if you could get us all practicing one thing, what would be the.

Graham: Difficult? I may not be able to distill that down to one, but I think yeah, but I think the first thing is to be health literacy aware. I think try as much as you can to try and understand or sense what this must be like for your patient. And we've all been there. We probably feel very comfortable in medical settings. But just put yourself, when you go to speak to your car mechanic about your car, your lawyer about something, or financial advisor, we all really struggle to understand what it's about. Be aware of the difficulties, try and spot those difficulties and remove the barriers and the obstacles and make things as enabling as possible for people. That would be the key message, perhaps organizationally as well in your team, if you can sort of have a health literacy enthusiast or lead like yourself, that's going to work hard to make with your patient group to make healthcare more accessible and engaging. So people do have the understanding and the confidence to be able to go through things. That's a big tip to awareness is really important. And I think that whole point of checking understanding, don't assume that you've understood each other. You check that, make sure the patient checks that you've understood and you get the patient to tell you what they've understood. And I think there's just two things. If you can practice those in your practice, you're well on the way.

Kate: Yeah, great. I think, as you see, it's such a huge topic and we could probably talk all day about it, but that is such a great start. And there's lots more resources on the Health Literacy Place website, aren't there, and training materials.

Graham: Yeah, absolutely. About eight years ago, when we developed our house literacy ambitions in Scotland, one of the things that we did set up was this house literacy Place, which is a resource, and I think most people should go and have a look at it and you'll find some useful things. It's also a good way to if you've got some useful health literacy interventions that you've been putting in practice, send them up to the health literacy Place, put them on the website and they'll get shared. And it's a good way of people in Dumb Priest learning what's going on in Inverness. Really useful community of practice. Yeah, absolutely.

Kate: We'll put that website in the show notes. Great. Well, that's a lovely conversation and thanks. So much.

Graham: Yeah. Thanks very much, Kate. Okay, all the best. 

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Kate: Welcome to the Realistic Medicine Podcast. We are taking full advantage of Health Literacy Month, and we are delighted to welcome Graham Kramer here to talk to us about about health literacy. So I'll start by introducing myself and Kate Arrow. I'm the clinical lead for realistic medicine in Highland. And then thanks so much for joining us. Graham, can you tell us a little bit about yourself?
Graham: Yeah. Thanks, Kate. And thanks for inviting me to take part in this. I'm a recently retired GP. I retired August last year, having spent most of my career as a GP in Montrose on the East Coast in Tayside. And I suppose I spent a lot of time in general practice with a big interest in people living with long term conditions. And for a few years in the latter half of my career, I was seconded to Scottish government as a clinical lead for self management and health literacy, kind of terms that are slightly confusing and people struggle to think what those might mean. But at the heart of it, it's really enabling and supporting people to be the sort of lead partner in their care, because we know that when people are the lead partners, when they're the active agent in their encounters with healthcare professionals, often health care outcomes are better, people make better decisions relevant to themselves when these sort of things happen. So there's a big political economy around supporting people to self manage, and a key ingredient to that is people being able to understand and engage in their own health and health care. And that's where some of health literacy comes in. And this is very important.
Kate: Grand yeah, because it's a term that we talk about a lot. And it became clear to me recently that not everyone fully understands what health literacy means and how they can improve health literacy. Can you kind of explain to us what it is from a clinician point of view and maybe from a patient's point of view?
Graham: Okay, that's interesting. I think there are sort of a few definitions of health literacy, and I just recently reading a paper, which was a whole paper discussed to sort of teasing out the various definitions of health literacy. It's really complex and I thought it would be disingenuous, but I think some of these are very good definitions. But I would argue that they suck. And I mean suck as a Mnemonic with S standing for skills, u standing for understanding, c for confidence, and K for knowledge. I think fundamentally, health literacy is about people having the skills, the understanding, the confidence and the knowledge to do what? To access and navigate the healthcare system, to be able to collaborate with their health care professionals, and I suppose, finally, to be able to self manage their own health and their health conditions in the way that they would want to necessarily force our treatment, some people. So that's sort of I think a light way of understanding that it's just remember the mnemonic suck skills, understanding, confidence and knowledge. There is a problem with these definitions because they often locate the problem with the person. So we might argue that people have insufficient skills and understanding, confidence and knowledge. And I suppose there's this great temptation to sort of really try and improve that, improve their skills and understanding and give them knowledge and things like that. And that's very important. But it's also a challenge for us to make healthcare much more easier to understand and more accessible and easier to engage with. I guess sort of in the evolution of the development of health prevention, health promotion, particularly in the old days where perhaps the biggest health problems were infectious diseases, communicable diseases, and health education was really important. So health literacy sort of was conflated a bit with health education. Now I think we're moving where people living with long term conditions. It's not really just the responsibility of public health teams. It really impacts us clinicians on how we engage with people and the onus for us to make healthcare much more understandable and engageable. The analogy, just a brief analogy that I've always used often tell this story, is 40 years ago, none of us had any computer literacy. We didn't really understand how computers work. And of course, IBM produced the first computer, which was this massive clunky thing which would have filled half your living room. And you would have had to have been an uber scientist or a geek to really want to be able to engage with one of these. And of course, what the computer industry could have done is they could have educated us all. They could have given us books and pamphlets to read about how to use these computers and how to code. They could have sent us off to evening classes. But in fact, what they did is they made computers a lot more engaging and simpler to use. And now, whether you're five or 85, using an iPad is so instinctive. I guess that analogy is how can we shift health and healthcare and the services we provide to be less like an old IBM computer and a bit more like an iPad, which people can engage with? So that's a useful analogy and hopefully that's sort of helpful overview of what health issues about.
Kate: Yeah, and when you say that, that resonates with me because the mnemonic that you talk about often as healthcare professionals, it's so easy to slip into Jargon and having the confidence and the knowledge on how to explain things in a way that people understand and within the confines of the time that we have to explain them can be incredibly challenging. I wrote all my letters to patients now, and it definitely takes practice and I'm sure I make mistakes in it.
Graham: I think that's a really good point. The thing about Jargon is these are terms that us healthcare professionals are so familiar with. We don't even know their jargon. We don't even know that the other person doesn't understand them. We do have to be very careful and it works some ways because sometimes if you try and oversimplify things for people and avoid jargon completely, some people feel at risk of being patronized. So I think perhaps the safest thing to do is it's okay to use jargon, but as long as you clarify that jargon, I'm just going to go and get my Glucometer. That's the little machine that I use to test your blood sugar and things like that. So use the words and then people pick these things up. And I guess in your case of point, if you are writing a letter, you can use the technical work but then put a bracket in as to explain that or have a little glossary at the end of something like that that explains these things.
Kate: Even translating terms between specialties can often be difficult because having an awareness that acronym in your world of anesthetics can mean something completely different in obstetrics. Yes, there can be a lot of confusion there, too.
Graham: I remember one little story, this is quite a case in point, actually, where people, when they go into hospital, acutely ill, and then they come out of hospital and they used to come and see me and I used to ask them, do you understand what happened to you in hospital? And it was surprising how many people didn't have a clue what happened, particularly of the sort of elderly. And I remember going to visit a nursing home and a little lady and the nursing home got a copy of the discharge letter and the diagnosis on it was non STEMI, which is a non St elevation myocardial infarction a heart attack. I went to see her with the carers and the nursing home and I said, how are you getting on after your heart attack? And none of them knew she had a heart attack. The patient didn't know that she'd been in with a heart attack and the carers had no idea because they know what non Stem meant. So we do have to be careful.
Kate: Yes, absolutely. So we can't assume that even our colleagues understand what we're talking about in our little bubble of our specialty. Absolutely. I mean, you've probably already alluded to it a little bit, but can you share the story of what really motivated you and to take this interest and do all this work around health literacy?
Graham: Yeah, I suppose I often tell the story and it really was sort of a light bulb bone and epiphany, really. I've obviously been seeing patients for many years and doing long term condition reviews with them and things. Anyway, one day I was out on some home visits and I came into the surgery, into my consulting room, and sitting in my chair at my desk was Ray, who was the taste side GP, It technician who went around servicing all our computers and updating them, upgrading them, and he often did that. And so he was in my chair and so I sat down in the patient chair and we kind of slipped into this role play. And I said to Ray, I said, common doc, how is it looking at the computer? And he began to tell me and all the things he'd done to it and the program files deleted and rebooted and everything. And it was absolutely I could get some of the words, but it was really gobbledy, really strange. And I found myself sitting there looking intelligent and nodding and taking it all in because I was kind of polite. I didn't want to say, I haven't got a clue what you're saying. And I suppose I was too embarrassed to sort of admit my own ignorance. And at that point I just thought, oh my God, this is exactly what it's like for my patients. And then I began to test that with them and lo and behold, conversations that I'd had over and over again with people, I'd realize that when you check their understanding, they haven't really taken in these concepts. It shouldn't really come as surprised, actually, because there has been research done, and this was in clinics quite a few years ago, in hospital clinics, that about half of what a person hears in a consultation is forgotten. So misunderstood. Half of what they've taken misunderstood, and of that half that is understood is easily forgotten. People are going away from these clinical encounters, often get very little out of it. Some getting a lot out of it, some getting very little out of it. Actually, when you think about it as a form of communication or education, as a vehicle for communication, it's quite ineffective. And when we're having 20 million consultations a year in general practice, 4 million consultations in hospital, there's a lot going through SIBs here and very inefficient. And I just thought, we've got to find ways of improving this. And so that was a kind of a motivator for me. Absolutely. And I guess the point of that is that the thing about health literacy or people's knowledge, confidence, understanding of skills is as clinicians, it's a kind of hidden disability. And people like me, with Ray, with the computer, we're actively disguising the fact that we don't understand. It's kind of shocking. One sort of take on health literacy is regarding it as a social disability. Really, that people, if they have functional literary problems or numeracy problems, that's a big issue. But if they just can't understand the information we're getting, well, they can't access health care. It's too complicated. It's a real disability for them. But with other disabilities that we can see, we actively do something about. And I always say that people with poor health literacy view health care in the same way that somebody with a physical disability in a wheelchair would see a world full of staircases. It becomes difficult for you to contemplate, difficult to engage in, and you don't you just stay at home because it's just too much for you. But because people in wheelchairs, that's a visible disability and we do something about it. We make everything disabled access much easier for people to get around, and we remove all those huge barriers because it's the right thing to do. But somehow with healthcare for USY, because it's hidden and we don't realize we inadvertently we don't mean it, but we inadvertently put all these barriers in place, often the barriers that we can't actually see. And it has a profound effect on people if they have poor health. Auto Sea there are some alarming statistics. There was 43% of working age adults in England are unable to understand the instructions on a childhood parasitamol packet or bottle because the wording and the numbers is pitched at a level that's above people literally in numerous skills for a lot of people, and that's just childoparacetama. When I think of all the other sort of complex drugs for trexat and morphine and all these things that we describe and the sad thing is that people with low health literacy have there's a good sort of rule of thumb that they really have twice the mortality and morbidity. So if you've got diabetes and very low health literacy, you're twice as likely to develop heart disease and failure and things like that. If you're over the age of 50 with anything and you've got poor husband, you're twice as likely to die over the next ten years. The economic cost of this in people sort of, I suppose, not being able to take the drugs as prescribed, increase use of health care services and e attendances and these sort of things, it's a huge cost to our economy as well. So it's a really big problem.
Kate: So how do we spot the people? How do we measure health literacy?
Graham: Yeah, and that's very difficult. And there's some argument that actually with the person that you have in front of you, do we need to know what their health literacy is? There's one argument that we should take a sort a of universal precautions approach. Just assume that they have low health literacy and don't use jargon and try and make things easier for them as much as possible. And that's quite good practice, really, because sometimes it might be quite shaming for people if we start, I guess, making assumptions about their house literacy. So that's quite a useful thing, this sort of universal precautions approach. And we shouldn't assume just because you might have people who are very high functioning university academics, you shouldn't necessarily assume that they understand what you're talking about. I remember talking to somebody about very high functioning civil servant, Cambridge graduate, and I was explaining renal patient view, which is where people can access people with chronic kidneys can access all their numbers and we have very good conversation about that. And then at the end of it she said, Graham, what does renal mean? We just mustn't assume it. Back to your question about how do we measure it with the individual patient. Maybe we should avoid measuring it. But I think what's really important is to check people's understanding and this is a really good practice. I think if you're seeing somebody. Maybe somebody has been referred up with a new diagnosis of diabetes or something. Just ask them before you even start. You know. What do you understand that diabetes is? And you'll get a clear idea from their explanation of it, where you need to start and where you need to begin and how to approach that. So I think that's a really important thing to do. The other thing to do is once you've had a consultation with somebody, I think the important thing is then is to check their understanding as well. And we often talk about this process of TeachBack where you get the person to say, because I'm not very good at explaining things to you, can you just tell me what you've understood and what we can get out of it? And that's a great way. Often it's a very good feedback about your own consultation skills and how good you are as a communicator and often people get it spot on and that's really reassuring, but also it's really helpful because it does clear up any misunderstandings and means the person is not leaving you going out with completely false ideas, which can be really dangerous, so that can be helpful. People say that takes time, but it saves time in the long run, so it's worth investing in that.
Kate: That really rings true with me. I remember I heard a talk from a lawyer about sort of legal aspects of medicine and I really didn't understand a thing. And what I did though was I then went to look up what it all meant and that's probably the danger as well. If we don't give information in a way that people understand, they go to their alternative sources which might not be true or credible, and they can go down that Google rabbit hole and then that leads to so much anxiety and more ill health around and you can see how the cycle goes.
Graham: Yeah, absolutely. I just forgot what I was going to say. I was also going to flip that round, actually. I think it's really important that we encourage or we demonstrate that not only we're very keen to know that the patients understood us and heard what we've had to say, I think it's really important for the patient that they feel that we've understood them as well. I kind of think about this reverse teach pack or summarizing. So if patients been telling you their problem, say, look, if I've understood you right, I think this is what you're saying. This and this and this and that's really important because we can label under misunderstandings about their mis assumptions. And so that's really important. And of course, I think the important thing about that is they feel that they've been heard and understood and that's really important in building trust in a relationship. And trust is fundamental, particularly well for any relationship in the therapeutic relationship. It's really important. And perhaps the cornerstone of shared decision making is building up that trust. So that's really important.
Kate: Yeah. Up here in the Highlands, we've got this sort of added issue where we have big rural sort of small rural populations, but very disparate. And when we look at the index of deprivation across Scotland, they're often some of our more deprived populations living further away from services. So we're communicating with them potentially more with near me, with phones. What are the things that we can all be doing to improve that interaction?
Graham: Okay, that's a very good question. Perhaps one of the first things to do is to obviously engage with our patients about what would make it easier for them as well. So if we can design the delivery of our services through the lens of the patient, then that would be a huge advantage. I know you've done a lot of work around that, Kate, when you're in Tayside and encourage them to tell you what would make it easier for them, or encourage them to tell you what was impenetrable and what they couldn't understand. That's the first thing. A key thing, I think is, as I said to you, the consultation we have is such a poor vehicle for exchange of information and patient education and these sort of things that we feel are important, but a way it can be vastly improved is through preparation before the consultation. So one of the stuff we do around sort of involved with around people with long term conditions is normally they're coming into a consultation and we're telling them your weight has gone up and your blood pressure is a bit high and your sugars increase. And it's very difficult for them to take in this information, particularly when we're giving numbers and expecting them to sort of come up with some ideas about what they're going to do about it. It's really impossible. But if you give that information to them before you have that consultation so I think your letters are great and in fact. Perhaps giving them some idea of what's going to be discussed. Something that they can think about giving them. If you do send the results out to them and give them some white space so they can write down the things that are important to them. Matter most to them. Sometimes you sort of prompt them as to what they might want to talk about. Especially with people like diabetes. Do they give them permission to talk about erectile dysfunction? Giving them permission to talk about their housing or their problem with their benefits because all these relationships, because all these will seriously infect their diabetes and give you some context. You might not be able to do anything about them, but it gives you a lot of context. It's really useful. So that bit of preparation and there's amazing a difference that makes. When we started doing that for patients, I used to get people coming in and you've given them their results for the first time in years and they've had time to look at that before they come in. Surprising things they say, well, what is this HBA one C then? Which is amazing because you've had that conversation with them for years and you thought they've taken it in, but they haven't. And so suddenly they highlight that and it's great if you do send them a letter that they don't understand. They can maybe share it with somebody in the family who might be able to understand it. Or at least they'll come back to you in the clinic and say, look, I didn't really understand this. Perhaps you can explain. And that's a productive way, your productive bit of time, you've really identified what the areas that they don't know, the unknown, unknowns and all that. So that's a really helpful so I think a key thing is for all of us as clinicians, if we're running clinics in general practice or whatever, is stop and think and think about how we can front end these consultations with some preparation for the person. That's a real useful tip.
Kate: Even just from the point of view of understanding how long they'll be an appointment. I think we get a lot of patients who come through a kind of one stop shop of a short notice surgical clinic and then they come for their anesthetic pre assessment and they've not come with the preparation of knowing that they'll be there for the whole morning and maybe bring a snack and a drink. Yeah, as well. These are the kind of things that we might discuss and these are the terms you'll hear. And please feel free to interrupt us at any point if you don't understand what we're talking about.
Graham: Yeah, absolutely.
Kate: I think sometimes we don't. There's lots of evidence out there that talks about how much we talk as doctors and we don't give people room to even interrupt, to ask a question. And I've been an advocate for a family member before who's received a monologue of technical information about a baby in neonatal ICU. And I found it hard to keep up. And there was absolutely nowhere that I could have politely interrupted him to say, could you explain what vent and adrenaline. I've always wanted to do this thing where I give a patient a yellow card almost to hold up if you don't understand something, just hold it up just to overcome that stream of words which can be impossible to politely interrupt.
Graham: Yeah, I think so. I suspect if I learn one thing over my career, I find it very difficult to practice it, but the time in a consultation for us trying to understand the patient and what matters most to them is probably better time spent than trying to understand me, actually.
Kate: And that's great. And so you've given us so many tips, which I'm going to go away and put into action immediately. But what would be like your one take home message? Like, if you could get us all practicing one thing, what would be the.
Graham: Difficult? I may not be able to distill that down to one, but I think yeah, but I think the first thing is to be health literacy aware. I think try as much as you can to try and understand or sense what this must be like for your patient. And we've all been there. We probably feel very comfortable in medical settings. But just put yourself, when you go to speak to your car mechanic about your car, your lawyer about something, or financial advisor, we all really struggle to understand what it's about. Be aware of the difficulties, try and spot those difficulties and remove the barriers and the obstacles and make things as enabling as possible for people. That would be the key message, perhaps organizationally as well in your team, if you can sort of have a health literacy enthusiast or lead like yourself, that's going to work hard to make with your patient group to make healthcare more accessible and engaging. So people do have the understanding and the confidence to be able to go through things. That's a big tip to awareness is really important. And I think that whole point of checking understanding, don't assume that you've understood each other. You check that, make sure the patient checks that you've understood and you get the patient to tell you what they've understood. And I think there's just two things. If you can practice those in your practice, you're well on the way.
Kate: Yeah, great. I think, as you see, it's such a huge topic and we could probably talk all day about it, but that is such a great start. And there's lots more resources on the Health Literacy Place website, aren't there, and training materials.
Graham: Yeah, absolutely. About eight years ago, when we developed our house literacy ambitions in Scotland, one of the things that we did set up was this house literacy Place, which is a resource, and I think most people should go and have a look at it and you'll find some useful things. It's also a good way to if you've got some useful health literacy interventions that you've been putting in practice, send them up to the health literacy Place, put them on the website and they'll get shared. And it's a good way of people in Dumb Priest learning what's going on in Inverness. Really useful community of practice. Yeah, absolutely.
Kate: We'll put that website in the show notes. Great. Well, that's a lovely conversation and thanks. So much.
Graham: Yeah. Thanks very much, Kate. Okay, all the best.