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 Maureen Maurer, who brings a strong background in health behavior and health education. Her work focuses on engaging patients, families and community members in health research, healthcare delivery and health policy.
Maureen now directs a research support project for the Patient-Centered Outcomes Research Institute, otherwise known as PCORI. The PCOR Translation Center supports PCORI’s commitment to ensuring that research findings are comprehensible and useful to patients, clinicians and others making healthcare decisions.
Maureen and I met years ago when she invited me to lead a health literacy plain language workshop for her colleagues at the American Institutes for Research, or AIR.
I recently contacted Maureen again after reading the terrific paper that she and colleagues wrote, “Lessons Learned from Developing Plain Language Summaries of Research Studies,” published in the Journal of Health Literacy Research and Practice.
Welcome to Health Literacy Out Loud, Maureen.
Maureen Maurer: Thank you so much for having me. It’s great to be here.
Helen Osborne: Let’s take it from the beginning. Plain language summaries of research studies. I don’t know how much this concept is catching on, but can you take us all from the start? What are they? Who are they for? Why are they needed? How do they help? Let’s just introduce everybody to plain language summaries of research studies.
Maureen Maurer: Sure. Plain language summaries are typically a short summary of a research study and its findings written in a way that the lay public will understand.
For the Translation Center, we draft a plain language summary written at a 6th to 8th grade reading level based on a final research report that the principal investigator of the study submits to PCORI.
Helen Osborne: I gulped a little bit when you said 6th to 8th grade reading level. As listeners might know, and perhaps you know, I am very reluctant to use reading grade levels as the tool of success. Also, you’ve got research studies. They must have a lot of big words. Can you really accomplish that? How do you do it?
Maureen Maurer: I share your hesitation with the reading level tools, but one of the things we do is test all of our summaries with the intended audiences, so patients, clinicians and healthcare administrators, to make sure that they’re being understood as intended. That, I think, is a really important part of the reading level.
There are times where the 8th grade reading level is hard to meet when you have a lot of technical terms. We do our best. But occasionally, we will need to run the reading level without the three-syllable word that’s making it challenging to meet that reading level requirement.
Helen Osborne: A word like “chemotherapy” or something?
Maureen Maurer: Exactly, which is important to define and then you can use throughout.
I think the main point that we want is for non-researchers to be able to read the summary and walk away with an understanding of the main points, including an understanding of the limitations of the study and how the results could be useful in decision-making, recognizing that a single study is a single study and you need to take into account the broader evidence base and patient preferences when making decisions.
Helen Osborne: I read a lot of studies, and actually, my eyes glaze over on some of them when they get to those charts, graphs and p-values. I do go to the summary or abstract right in the beginning and the conclusion at the end, and I’m pretty savvy about health information.
Are the lay public going to these that are in plain language, those who are not as steeped in science as even I might be?
Maureen Maurer: I don’t know for sure, but PCORI tracks the Google Analytics and there has been a ton of interest in these. That doesn’t mean we know who is going, but there’s definitely interest and use of these.
I think even for professionals, they often benefit from a plain language summary. People can read that first and then, if they’re interested, can move on to a more technical summary, and then even the full report on PCORI’s website.
Helen Osborne: As reluctant as I am and skeptical as I might be in being able to do this well and consistently, I am championing them on. We all need to be able to understand this information. These scientific studies and research studies are how and why we make decisions, how progress happens.
I was involved with PCORI for many years as a member of one of their advisory panels. You’re looking at comparing two options, a comparative effectiveness. Everybody needs to understand that, so I am applauding this effort. But I’m also appreciating how difficult it might be.
Have you done this just on a few? Have you done this on a lot? Tell us of the scope of the work that you’ve been doing.
Maureen Maurer: First, I just want to start off by really appreciating PCORI’s commitment to transparency. Not many funders are sharing results of the study no matter what the outcomes are, even if they’re not necessarily what was planned. They’re making these useful.
Going back to your point about decisions being made, these plain language summaries are just, I think, a really good way of contributing to public discourse in general about science and how we communicate about science.
By making these results publicly available, the public can better see how science works and how it may not always work or go as planned, and that it’s really about continually learning. I think that’s really important to get across.
As the Translation Center, we’ve been doing this work since . . . I think we published our first summary in 2017. To date, we’ve drafted more than 300 that are posted on the website.
Helen Osborne: Oh my goodness.
Maureen Maurer: It has been a ton of work. There is a large team of people working on this project, more than 30 people. We’ve got writers, reviewers, copyeditors and subject matter experts reviewing these, and, of course, the principal investigator of the study and the PCORI Dissemination and Implementation program team.
Helen Osborne: Are your patients on the review committee, too?
Maureen Maurer: Yes. The reviewers are patients. Also representatives from community-based organizations, patient advocacy organizations, healthcare systems and clinicians. We try to get any of the intended audiences to review these.
Helen Osborne: Wow. That’s so comprehensive.
We didn’t plan this ahead, but do you happen to have a little snippet somewhere of what a plain language summary is like? Could you read us one so that all the listeners can get a sense of how they read?
Maureen Maurer: Sure. Here is one. I won’t read the whole thing. Actually, you can take a look at PCORI’s website to do it. But I’ll read the first part, which is, “Here’s a research summary for comparing the effectiveness of home, clinic and kiosk blood pressure checks for diagnosing high blood pressure, the BP Check Study.”
We start with what the research was about. “Because high blood pressure has no symptoms, a correct diagnosis is important for getting treatment to prevent strokes, heart attacks or other future health problems.
“To diagnose high blood pressure, medical guidelines recommend wearing a monitor at home that checks patients’ blood pressure over 24 hours. But doctors rarely suggest this approach.
“In this study, the research team wanted to learn if other methods to check blood pressure worked as well as the 24-hour monitor to diagnose high blood pressure. The team compared the 24-hour monitor with three methods.” Then we go on to define the three methods.
Helen Osborne: I am so impressed. I’m so glad you did that. It was so clear. You reading it is certainly conversational, in the way that if we were just sitting next to each other I’d want you to explain it to me. That’s also how you’re writing, in that conversational tone but informative.
Maureen Maurer: Yes. Something to test out, I think, when you’re writing in plain language is I often read it aloud to see if it makes sense.
Helen Osborne: I do that, too. Great tip. Hearing that from you, I hope that listeners are equally impressed.
Let me put this in context. Listeners for this podcast might be from anywhere in the whole wide world. They might be in healthcare, public health, clinical medicine, librarians, teachers, students or the lay public. What are lessons learned for all of us about your experience working on more than 300 of these studies? What can we learn if we want to put it into practice for what we’re doing?
I don’t think all of us will be writing plain language summaries of research studies. But we sure have to learn how to write clearly and simply about what’s going on about a condition, a treatment or an option.
Maureen Maurer: One of the things actually, Helen, that I learned from your training several years ago was that plain language is not just about substituting simpler words. It’s also about organizing information in a way that people can understand.
I think that applies to all health communication, about layering and organizing information in a logical way and telling a coherent story.
For us, it’s about why the research is important, what the goal was, what was found and the limits. But for health communication, it could be about a condition or a topic like what action you need to take.
In the example that I read about ways to diagnose high blood pressure, we need to make sure to first describe what high blood pressure is and why a correct diagnosis is important, and then also describe how doctors usually check high blood pressure. You’re setting out what the gaps are or what the research is trying to address. All of that is really important.
I think as another example, we’ve had to develop several summaries focusing on really complicated statistical methods that can advance how researchers do comparative effectiveness research.
In these cases, we need to define what those underlying research concepts are first. What is comparative effectiveness research? What is a randomized control trial? Then you can understand what those gaps are.
That layering of information is just really important when we think about health communication.
Helen Osborne: Some questions. I sometimes talk about what I refer to as the ethics of simplicity. Those of us who are translating information from the more complicated to the more simple, in what order do we put information? What points do we include? What do we leave out? How do we balance scientific terms and precision with clear wording?
There are a lot of dilemmas writers have to face every day, but you faced it in this big chunk now. How do we resolve some of those ongoing issues?
Maureen Maurer: I think we need to take some of those on a case-by-case basis. I’m reminded by advice to think about what’s nice to know versus what people need to know.
Researchers also have very strong feelings about what’s important to communicate about their study, and make sure that any language that we use is accurate and precise and doesn’t mislead the public about what’s going on in the research.
It’s this balancing of precision and plain language. A lot of times, we do use the technical terms and define them in order to make sure that it’s precise. But in other times, do we all really need to know this really specific statistical method that might not be relevant at any other point in our lives? Probably not, so we leave those out. We take that on a case-by-case basis.
Maureen Maurer: I also think plain language helps us to be more specific. Often, we in health research and healthcare use jargon. That makes our meaning less clear.
Helen Osborne: Like what? Give an example.
Maureen Maurer: One word I had to translate into plain language recently was “infrastructure.” Infrastructure can mean so many things. Right now, we’re talking about an infrastructure bill, and that means maybe bridges and roads. But in research, research infrastructure is something completely different. Being specific that it might mean data sets or people who do the research, those things make it more accessible and more specific.
Helen Osborne: I love that example. I face that all the time. I also face the problems when we use words that mean something to us in healthcare but may not mean the same to the general public. It’s a simple, short word, and that’s “screen,” like in healthcare tests. But I’m looking out my window and I see this mesh there that keeps the bugs from coming in.
Do you explain words that like, too, that aren’t necessarily so complicated? They’re familiar, but have a different meaning.
Maureen Maurer: Absolutely. We try to define screening. Sometimes we use the word “test,” but we always want to make sure to say “screen for what,” “test for what,” so that it’s clear from the context.
I think another word that is often used in research and others is “tool.” A tool or an intervention can be so many different things in healthcare. A tool for most of the lay public is something like a hammer or screwdriver. It’s just being very specific about what we mean by “tool.”
Helen Osborne: I’m smiling. That just came up when I was talking to a professional in another discipline about this new toolbox. He said, “You mean this?” He was showing me a tool. He did not know it as a word meaning “a collection of strategies.” Wow. We really need to watch all our language.
More questions. How do you balance the needs and interests of the scientists with those of the reader? You talked about sometimes scientists really want all this more complicated information. How do you navigate through that?
Maureen Maurer: It’s a negotiation. Scientists often have a really good point and are really passionate about what they’re doing and want to make sure that what they’re doing is conveyed accurately. We want to respect those opinions and make sure that we’re incorporating the essence of what their feedback is trying to do. Maybe we can adjust the language slightly to be a little bit more accessible to a general audience.
It’s a constant negotiation back and forth between all of those different perspectives.
Helen Osborne: You’ve had so much experience about this. You’re doing this a lot. There are many listeners who might be approaching this once in a while on no budget to bring in the whole team that you’re working with.
What recommendations would you have for those of us who want to communicate scientific information clearly and simply but just do it sometimes?
Maureen Maurer: I’m hoping that people can benefit from the work that we’re doing. We’ve developed a template to be really clear about what the research was about and what the results were.
Helen Osborne: Wait, I’m just going to stop you right there. You said, “What we’re doing.” Is this available to the public? Can we all see it?
Maureen Maurer: On PCORI’s website, you can take a look at all of the plain language summaries. They might sometimes be a little challenging to find, but if you go to Research and Results and look at completed studies, you can see how these summaries look. There’s a standard template for all of them.
Helen Osborne: We’re going to have the URL certainly on your Health Literacy Out Loud web page.
You talked about a standard template. Tell us more.
Maureen Maurer: Sure. We developed this template. We did focus groups and interviews with consumers, clinicians and people who were familiar with PCORI, and also got input from a 15-member technical expert panel.
This template has really helped tell the story of the research study. It uses a question-and-answer format. It puts what was most important to patients and consumers up front. Again, it’s understanding the purpose and knowing the results.
Basically, Helen, what you had mentioned earlier about reading the conclusions first, we want to make sure those conclusions are very clear from the start.
Then people wanted to make sure, “Were the people in the study like me?” or, “Were the people in the study like my patients?” It includes a lot of specifics about people’s age, gender, race and ethnicity.
Helen Osborne: That’ll be great. I hope that people go to that page, look at the templates and see some examples. Also, on your Health Literacy Out Loud web page, I’ll have a link to that fabulous article that you wrote that has a lot of specific recommendations.
You and your team are doing amazing work. I also thank PCORI for building this in as a central part of their process. There’s applause to go all around.
Putting on your future hat, I know you’ve been a fan of health literacy and plain language for many years, but what would you like to see in years ahead if everything worked just the way you wanted it?
Maureen Maurer: Especially thinking from a research perspective, editors of journals and other publications and funding agencies, like government agencies and foundations, these folks often act as gatekeepers for sharing scientific information.
I would love to see them publishing plain language summaries for all of their studies and projects so we have the opportunity to promote a more equitable and inclusive system. That’s really what I would love to see in the future.
Helen Osborne: Me too. It’s not just PCORI-funded studies, but all of our studies in research.
Maureen, thank you for all you’re doing and for sharing it with us. I’m so glad we reconnected. Keep going with those plain language summaries. We need them.
Maureen Maurer: Thank you, Helen. It’s been great. It’s been a lot of fun.
Helen Osborne: As we just heard from Maureen Maurer, it’s important to communicate in plain language, even about something as complicated as research studies. But doing so isn’t always easy.
For help clearly communicating your message, please take a look at my book Health Literacy from A to Z. You might be especially interested in the chapter about writing in plain language.
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. Together, let’s tell the whole world why health literacy matters.
Until next time, I’m Helen Osborne.