In this episode of Karger’s The Waiting Room Podcast, we talk with Catherine Richards Golini about health literacy. Catherine works as a Healthcare Publications Editor at Karger Publishers and is an experienced medical editor, a teacher of English for medical purposes and a writer of plain language summaries (PLS) and patient resources. She holds a PhD in Applied Linguistics from the University of Swansea in Wales.
The World Health Organization (WHO) defines health literacy as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”. While we can’t influence the level of knowledge or personal skills of an individual, we can make sure the information we as a publisher offer is relevant and easy to understand. Thus, we support patients and their supporters in their efforts to make informed decisions and be on a level playing field with all actors of the health care system.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
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I know that health care, communication, health literacy and patient-centered medicine are topics that are close to your heart. When and how did this interest start and how did it develop?
I love talking about health care, communication, health literacy and patient-centered medicine, so this might be a long answer. I was a language teacher for many, many years. I taught English in England and in France and for 20 years in Switzerland. And the last 15 years I was teaching medical English. And because I enjoyed medical English and medical language and medical communication so much, I decided to do a doctorate as an adult. I was in my early forties, actually, when I started my doctorate, and my doctorate was very much about health care communication. It was a doctorate in applied linguistics, but very specifically my doctorate looked at patient materials for radiography and applied some applied linguistic concepts and themes etc. to written patient information for radiography. Just to try and find out really why it is that people don’t often understand health care materials and to see whether or not some corpus linguistic tools, that’s computerized analysis, whether that could somehow reveal some of the problems with the language that then may help us produce better materials. So, that’s how the interest started.
And where do plain language summaries fit into this?
Well, plain language summaries. I can answer that question in two ways. I can answer the question “How did you get involved with plain language summaries?”, and that’s very easy to answer. I was approached when I was doing my doctorate, and I’m involved in it in a patient information forum and chatting about these things. Somebody contacted me and said: “Listen, I have a company and I produce plain language summaries and I need a linguist who knows about this kind of thing. Would you come on board and review our materials?” So that was how I professionally got involved.
But in terms of health literacy and plain language summaries, what’s the connection? Well, plain language summaries, in common with health care materials in general, need to be created with health literacy and readability in mind. Readability is essentially how easy something is for somebody to read and comprehend. Now, this is very much a topic in health care materials because around 40% of adults in the UK and a very similar number in most European countries find it difficult to understand the health care materials that they’re given or they come across online. And that’s hugely problematic, of course. And health literacy is all about being able to process health information to understand it and to act on it. So, by that I mean to make well-informed health decisions for themselves and the people they have responsibility for. So, that’s the link between, I suppose, health literacy and plain language summaries.
And can you tell us what makes for a good plain language summary?
Well, that sounds like a simple question. Unfortunately, the answer is not quite as simple [laughs]. I can probably tell you what makes for a bad plain language summary. And the reason I approach it this way is that plain language summaries come in all sorts of shapes and sizes. They’re not all short. They’re not all like abstracts. Some of them are much longer, some of them are graphic and illustrated, a bit more like an infographic, if you like. Some of them are part of the original research paper. Some are standalone summaries with their own ISSN number.
What makes for a bad plain language summary is when it’s not clearly written for people outside of the field. So, we have to keep in mind that a plain language summary is not just an abstract, it’s not like an abstract. It might look like it and the content must be the same, but it has to be written in a different manner. And we know it’s written for people outside of a specialist field because it’s free of technical jargon and it doesn’t use acronyms. Or if it does, it will explain them and it defines any terms that are specific to the specialist or scientific field. So, there’s no unnecessary detail, and there may also be extra information to provide background context, because a lot of the readers of these plain language summaries don’t have that background contextual information. So, that might be what makes for a good and a bad summary [laughs]. It’s the same answer.
It sounded like a checklist where one can really tick off the boxes to see if this is a good or a bad plain language summary, what is still missing and where more work has to be done.
Absolutely. In fact there are some very good guides out there which really are like checklists. You know: Think about this, think about that. Have you done this? Have you checked this? When you consider you end up with possibly just 250 words, there’s an awful lot of work that goes into producing a good plain language summary. And then you also start adding extra information if you need to. So, you always have to keep the readership in mind. You’ve always got to keep the end user in mind. And it’s quite a skill writing a plain language summary. When they’re done properly they will be written by the people who wrote the original research paper or be reviewed by the people who wrote that research paper. They have to be peer-reviewed.
I’d rather go for the review than for the writing, because what you just told us is that you’d need an awful lot of skills. And I’m sure not every researcher who is a good researcher has the language skills. So, I’d rather go for a plain language summary writer and then have it reviewed.
Yes, I think a lot of researchers would want to do that as well because I think it is a skill. Writing is a skill. Any form of professional writing is a skill. And I think that a researcher is not skilled with writing plain language. Most people aren’t. Plain language is simple language, but you have to also be aware of appropriacy of vocabulary and lexical terms and how to go about simplifying a sentence, cutting down a 12-word sentence to a 9-word sentence without affecting the content.
Were there surprises when you got back some of your plain language summaries from review? Or were there discrepancies until both of you were happy with the result?
Well, sometimes when I review plain language summaries, I don’t see the comments from the subject specialist or the medical specialist or the clinical specialist or the researcher. I don’t see those comments. I may see the paper back again or the plain language summary back again once some of my comments have been incorporated. But we’ve also got patient reviewers and patient advocates who are involved in reviewing plain language summaries. And what surprises me more is some of their comments because actually we’re all patients. But when you’re writing for a patient advocate who is really very skilled at thinking always with the mind of a potential reader for this condition or this pathology or this disease or whatever, they see things that you just don’t see. And I always find their comments to be very, very helpful.
What can we as a publisher do to promote health literacy?
I think I didn’t say as much about health literacy as I could have done earlier. And I think, being able to make well-informed health decisions for yourself and for the people you have responsibility for, to take care of your body, to establish a healthy lifestyle, if you like, to prevent disease that being health-literate. But there are other things as well, such as understanding your current illness or you have somebody in the family with a current illness, and being able to work towards recovery and communicating with a primary care provider or specialist. Having a dialog, being confident to ask questions and having the knowledge that gives you the confidence to ask the questions about your condition or your family member’s condition.
Now, that’s where I think publishers come in because publishing evidence-based health information that’s presented in accessible formats, and by accessible I mean comprehensible. And it doesn’t have to be text, of course. It can be videos, audio like this podcast, graphic information, whatever. But it’s about making this information available to readers and making it accessible. I think that’s one of the major things that publishers can do to promote health literacy. And with regards to plain language summaries, of course, actively encouraging researchers to submit a plain language summary alongside their research. That’s also what a publisher like Karger can do.
What other players are involved when it comes to improving health literacy and what should they do?
There are so many people involved in this discussion of improving or raising health literacy standards. And it starts at the top with governments and policy makers and goes right down to family, schools, communities, child education services, employers, health insurance. In a country like Switzerland, health insurers have a huge role to play as well. Health systems like the NHS in the United Kingdom and health care providers are nurses, our doctors, the people that we go and see, our dentists, making sure that they’re aware themselves of what health literacy is and how to check for it in their patients. If a health care provider doesn’t know what health literacy is, they can’t recognize it in others. I think it would be very difficult to find anyone who doesn’t have some role to play in raising health literacy standards.
What do you expect how health literacy will develop in the next five years?
I think actually it’s a very exciting time for anyone who’s interested in health literacy. And there are many more people more interested than I am. I mean, people who devote their entire careers to health literacy, of course. But it’s an exciting time because there are an awful lot of ongoing initiatives, government initiatives, a lot of investment. Technology has absolutely changed the way that we can approach health literacy as well. We’ve got all manner of apps being written and promoted by healthcare systems, wearable devices, etc. Things like medical records being available online to the patient. Now, I don’t know how it is in Switzerland, but in the UK, for example, patients now have the right and they’re not all aware of this, but they have the right to access their medical records online. And patient rights to knowledge and the rights to access data that’s being held about them.
The patient-centered medicine is being talked about in ways that was inconceivable 20 years ago. So, I think it’s a very exciting time. I couldn’t tell you where we’d be in five years, to be honest with you. But I suspect many of us will be much more comfortable with technology and apps and monitoring our own health than perhaps our parents’ generation would have been.
And there is a key point here: We have more information than ever but we can’t understand it. But we’re taking steps. I mean, if you really wanted to, I’m sure you could have found an online site, make sense of your medical record or something. I know that they do exist. We shouldn’t have to go to those lengths. Isn’t that the point? And I think we can talk very much about health literacy as if it is primarily the responsibility of the patient and the education service and schools, etc., train people to be health-literate and it will be okay. But of course it isn’t because the other partner in this conversation is the health system itself. And I’m aware that different cultures have different attitudes towards patient-centered medicine. Certain cultures are perhaps a little bit more cautious about giving too much information to patients. They’re not quite ready for that amount of information overload as they see it.
But I come back to my point earlier about training medical professionals and medical systems and insurers and anyone who’s involved in the provision of medicine; training them to understand what health literacy means and the impact of poor health literacy. And if they are sensitive to health literacy, they can recognize it in others and they can look again at the material that they’re producing and think, you know: “Is this appropriate? Is this going to be comprehensible?” And if the answer is no, they find another way of imparting that information.
It was a pleasure talking to you, Catherine. Thank you very much for your time and your insight.