Health Literacy Out Loud Podcast #69:
Problematic Words in Health Research
Jessica Ridpath founded a research-centric plain language initiative called Program for Readability In Science & Medicine (PRISM) at Group Health Research Institute in Seattle, WA. In this initiative, Ridpath provides plain language editing, training, and consultation for health researchers, health education writers, hospital staff, and public health employees. Her focus is often on writing clear and understandable informed consent forms for research.
Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and host of Health Literacy Out Loud.
In these podcasts, you get to listen in on my conversations with some truly remarkable people. You will hear what health literacy is, why it matters and ways we all can help improve health understanding.
Today I’m talking with Jessica Ridpath who founded a research-centric plain language initiative called PRISM. It stands for Program for Readability in Science and Medicine. This program is based at the Group Health Research Institute in Seattle, Washington.
Working with PRISM, Jessica provides plain language editing, training and consultation for health researchers, health education writers, hospital staff and public health employees.
I met Jessica at a recent IHA, Institute for Healthcare Advancement, health literacy conference where she presented an awesome session on plain language initiatives.
I was so impressed with Jessica’s plain language passion that I invited her to be a guest on this podcast. Welcome, Jessica.
Jessica: Thank you so much for having me, Helen.
Helen: All right, I get it. You actually teach scientists and researchers how to communicate in plain language. That sounds like a mighty big task indeed. Do tell. When you say “plain language,” what do you mean by that term?
Jessica: We use the term “plain language” as just a synonym for clear communication. It’s really about speaking with or writing to the audience in a way that will resonate with them. It means using terms and techniques that are going to be meaningful for your audience, whoever they may be.
Helen: When you are teaching scientists and researchers, their audiences sometimes are their colleagues and peers, but sometimes it’s the general public. What do you most want them to know about plain language?
Jessica: For me personally, my awareness of the pitfalls of communicating with a lay audience when you’re a scientific or medical professional had to do with informed consent. I think we’re all pretty familiar with informed consent for clinical care, but there is a very rigorous informed consent process for research that involves people.
Helen: That is written paperwork too, right?
Jessica: Yes. I got started at the research institute as a research assistant. One of my main jobs was to do informed consent with our study volunteers. It occurred to me one day that our consent forms were reading more like a scientific manuscript or grant than like plain language for people in the general public.
To me that was understandable because that’s our scientists’ bread and butter. They write grants and manuscripts for a living, and because of that I had my job. The light bulb that went on in my head was more like thinking, “There is a lack of awareness that we need to communicate in a different way for these people who don’t have the same background that we do.”
For something like informed consent, it’s critically important that they get the information they need in a way that they can comprehend so they can make a truly informed decision.
Helen: I’m always seeing those informed consent documents, and I have literally seen many of them. I know how difficult they are. I’m envisioning them almost like a bridge from that scientific body of knowledge and those scientific communicators to the lay public. That’s really a tool to help everybody understand one another.
Jessica: You’re absolutely right. I think the main centerpiece of informed consent is a conversation. You need to have a back-and-forth two-way conversation between the person administering informed consent and the person who is doing the consenting.
That form, that printed piece of paper, is the participant’s enduring record of what they have agreed to, so it does need to be spelled out very clearly. It does need to be something they can take home to their friends and family and show them point by point, “I’ve agreed to be in this study. This is what I’ll be doing, this is what the risks are, and these are the anticipated benefits if there are any.”
As you may know, Helen, what has to be in those consent forms is governed by federal regulations which have stated forever that those forms need to be understandable to the subject.
Helen: They do, but those regulations are often not quite understandable. That, we know.
Jessica: You’re right, and that’s the doubled-edged sword. We have these regulations to protect human subjects participating in research through a rigorous informed consent process.
However, the regulations and guidelines from the Office of Human Research Protections, a part of HHS, are not always all that clear. That leaves our one-on-one individual institutional review boards left to govern what that means for their own institutions.
Unfortunately, what some studies have shown is that our medical schools and other research institutions in the US aren’t actually meeting good grade-level targets, even when they know they should be fielding materials at an eighth-grade reading level, especially true of consent forms. They’re not typically meeting those targets.
Helen: I know from doing a lot of plain language writing myself that it’s nearly impossible sometimes to reach those targets when you have very necessary multi-syllabic words.
Getting to the end of that story, is it safe to assume that you did come up with an informed consent form that was truly understandable?
Jessica: I wouldn’t say that it was any one form, but we’ve created a package or suite of tools, if you will, to help researchers do that within their own context.
Unfortunately, one of the things about research consent is that you can’t just put out one template that is going to meet everybody’s need.
There are different regulations that come into play depending on who the researcher is. There are different privacy protections depending on if you provide health coverage and do the research. There are all kinds of things going on.
Instead of one readable consent form, we took the approach of showing people how to do it by doing tons of examples and putting easy-to-use tools at their fingertips.
You mentioned those multi-syllabic words. You’re right. Sometimes we have to use them, but we can at least define them and add a visual to help make them clearer or replace them with common, more everyday words.
One of the things PRISM has done is to create a tool kit that shows scientists and medical professionals how to do that. There is kind of a myth in plain language that it can’t be done and that some concepts simply cannot be explained using common, everyday terms.
Helen: I think another myth is that it is so easy to do it. For our listeners, rather than going into detail about all of this, is there a way that they could be learning from you and your recommendations or have any access to your tool kit?
Jessica: Absolutely. I’m really lucky to work in a research field where we have access to grant-funded projects, some of which have been really enthusiastic about the editing, training and tools that PRISM has created. We did create a tool kit. It is now an 81-page PDF available online for anyone who wants to download it from our website.
Helen: Is it free?
Jessica: It is free. You can access everything from our PRISM homepage. Unfortunately, the URL is very long so I’m going to give you the TinyURL link.
Helen: You can give us the tiny URL, or we can put it on the Health Literacy Out Loud web page. We certainly will be doing that.
Jessica: That sounds good. That’s probably the best way to do it. For the online course, it’s not too hard. It is just http://PRISM.GroupHealthResearch.org. That takes you right to the registration page of the online course.
Helen: Thanks, Jessica. Rather than just focusing on informed consent for research documents, which I think could cover in about 10 podcasts and never even get done with the topic because it’s so massive, there is a term you use that I really am anxious to get to. That is a term I’ve heard you talk about in other situations. It’s problematic words.
Jessica: Yes, Helen. That is something I want to look into as we head into PRISM’s next version. Those are words that are never going to raise red flags on a readability assessment, regardless of what kind of assessment you’re using. It could be something automated like the Flesch-Kincaid or something more rigorous like the Fry Graph. Use very short, single or double syllable words.
Helen: Like what?
Jessica: “Risk,” for instance. The term “risk” has a couple very distinct meanings. You might see the word “risk” used to mean different things in the body of the same consent form.
Helen: Like what?
Jessica: One meaning of risk is the probability or chance that something might happen to you. You might read in the introduction, “This study is for people who have an increased risk of diabetes.” What we mean there is they have a greater chance of getting diabetes someday.
Later on in the consent form, you will definitely see something that covers the risks of the study. That’s a required element of informed consent for research. In that context, risk means suffering loss or injury. It’s a completely different meaning. I wonder sometimes when participants read those on our consent forms if they’re getting that we’re using that word in two different ways.
I also worry about when clinicians talk to their patients for preventive care about taking certain steps to lower their risks of breast cancer, diabetes, this, that or the other. I wonder if people understand clearly what that means.
Even more alarming to me is the word “prevent.”
Helen: Tell us more about the word “prevent.” That’s one we use all of the time.
Jessica: We do use it all of the time in both healthcare and health research. We say, “Stay on top of your screenings to prevent cancer.” Again, what we really mean is to lower the likelihood that you’re going to get cancer someday. Sometimes we use the word “prevent” like it means to absolutely ever keep something from happening.
I worry that if, for instance, we report results from a study that say they tested a drug and found that it could prevent breast cancer, will a woman get that letter and then cancel her next mammogram because she took the study drug, and they found it prevents breast cancer?
Helen: That’s really interesting. You mentioned just in passing a word that I see is a difficult or problematic word sometimes. That is the word “screening” or “screened.” As I’m talking, I’m looking through the window screen. What in the world does that have to do with a colonoscopy? I don’t know.
Jessica: Absolutely. I think that “screening” is one of those words because those of us who work in this industry are so well-steeped in that language. It’s not going to be one of those words like “randomization” or “mammography” where we’re going to say, “Folks might have a hard time reading that word.” We have to stop and ask, “Will folks even understand that word that we mean even if they can read it?” Reading is just the first step.
Helen: Are these words so problematic because they have two different meanings?
Jessica: A lot of times it’s the specialization of the word. A couple of words that don’t concern me as much but kind of make me chuckle when I see them in the research context are “observe” and “follow.”
I was reading a consent form once that said the study would be observing women getting mammograms. What they meant was that it was an observational study where they would be looking at the data collected from the mammogram, but the person from the street who reads that may think, “I don’t want to be in a study where I have to get a mammogram when someone else is in the room watching me.”
Some of these words do have two meanings per the dictionary. Some of them we just have used in a very specialized way.
“Follow” is another one. We talk about following study participants for two years. We’re not trailing them like the police. We are actually just looking at their data.
Those are the kinds of words that no readability scale is going to red flag. We have to stop and ask ourselves, “What does this mean? What are the various meanings this word could have if someone doesn’t already know what we’re talking about?”
Helen: Jessica, I certainly get the sense that your sensitivity has been raised very high for these words. You also say that they’ll never show up in any usual readability tool that we use. How would somebody else go about finding these problematic words?
Jessica: One of the best ways to do it is if you have the opportunity to go after some funding and do some grant-funded work with focus groups or different populations, give them a blank slate and say, “What does this mean to you?”
One of my dreams is to find a partner with folks who want to do health communication research that isn’t necessarily about asking, “Does this work better than that,” but what do people understand? What do people hear when we say “screening” or “prevent”?
I think finding out in a more qualitative way what the various meanings of those words are can point us to a way to do some more quantitative research on what will work best.
I think with all of these words, we’re taking on a layer of assumption when we really need to just open the book and find out what it is that people think.
Helen: I can always picture a few different dictionaries. There are dictionaries for researchers and dictionaries for the lay public. They can have the exact same words in there but different definitions.
What can people do about this? A lot of our listeners are writing such forms, whether they’re informed consent forms, procedure instructions, prevention information or whatever kind of health information it might be. It sounds like the first level is to be sensitive to these kinds of words, but then what?
Jessica: Definitely keep your eyes open for them. Practice a little ethnography and actually watch the people who are using the information try to use it.
Even if you can’t get a research study funded to collect data or do focus groups, you can at least observe people. Here I am using one of those words. You can at least watch people and watch the speed bumps they have, sort of the pitfalls they face when they’re trying to navigate through your document.
That was one suggestion that you and I heard in that session at the IHA Health Literacy Conference. People find out the most about what is troublesome in their printed material by just watching their users try to navigate.
Even if you can’t fund a focus group you can at least talk to a family member, neighbor or somebody else to give you an idea of what they understand when they read those words.
When it comes to solving the problem, at the very least, every sort of print material in an ideal world should have some kind of conversational follow-up.
If you’re giving a person the patient education handout on ways to lower their risk of diabetes, just stop and have a preliminary conversation that makes sure they understand what we mean when we use the term “risk” in that way. With space permitting in your document, you could add a little glossary of terms to make sure people have definitions.
Maybe it goes without saying, but a lot of times we hand out information that says, “Please ask any questions you might have.” That’s the kind of ask that isn’t going to prompt a lot of people to ask questions. There is also the stigma of thinking, “Gosh, I didn’t understand, and I don’t want to let on that I didn’t understand.”
One phrase I like to put in my forms is, “We’ve tried to make this form clear, but it might not be clear. Please ask us if there is anything in here we’ve said that doesn’t make sense to you.”
Helen: You’ve already directed them in the direction and given them permission.
Jessica: Right. We own the clarity or lack thereof. It’s not putting the onus on them to say, “We don’t understand.” It’s saying, “We know that we may not have said this in a way that makes sense and we’re happy to explain it to you.” I think that does make a little bit of a difference in tone and how likely people are to come with questions.
Helen: Jessica, you’ve offered a lot of tips right there. I’m trying to keep notes about them. Raise your sensitivity to problematic words, watch people using them, talk with them about it and have that conversation as they go through a document. Have that follow-up and maybe have a glossary there. Provide some tools for the writers and help people ask questions.
Those sound like great tips. There are probably many more, and I hope that people will go to all of your great resources.
That almost sounds like the easy part of the project for people who are listening to this podcast who do a lot of plain language writing and are already true believers. What about those scientists and researchers? Do you get pushback from them in doing this?
Jessica: I sometimes do. When I do, it often comes in the form of people being concerned of the nuances of the science being glossed over.
I know that in grants and manuscripts, every last detail of study result is critically important. When it comes to communicating study results to the general public or communicating in a consent form with potential study volunteers, the communication is really for them. It needs to be something that they can understand.
Often, the nuances of the science get so detailed and scientific that we run the risk of folks not understanding it at all or, even worse, misunderstanding and making false assumptions or drawing false conclusions from that.
I try to reinforce to my scientists, especially when it comes to informed consent, that the document is not an opportunity for them to illustrate the results of their studies. It actually is a tool to support informed decision. It’s a document for that participant. If they think of it in that way, it is easier for them to look at it and realize that not every single detail of the science as they see it necessarily has to be included.
Helen: I think that is a message that probably goes with everyone who is an expert in his or her field. We know so much, believe so much and care so much. I often say this about plain language. The hardest part is letting go.
I hear in this conversation as well as when I’ve seen you doing presentations that your passion for plain language is right out there, but let’s look at the other side. What about plain language do you find challenging or keeps you up at night?
Jessica: It’s knowing that in my gut I feel like I’m doing the right thing. I feel like I’m taking words and concepts that are written in very jargony ways or in a very scientifically dense way and turning it into language that is going to be more understandable for folks.
This is still operating off of my training as a writer and my intuition as a person who has been a patient and knows what has worked well for me in healthcare and health research and what hasn’t.
What keeps me up at night is knowing that some of the things I’m doing are still based on assumption. I would really like to have the opportunity to take some of the work we have done with PRISM and put it to the test and say, “We have re-written this paragraph from a 15th-grade reading level to a 7th-grade reading level.”
That it in and of itself is an achievement, but I still can’t be assured that it’s working for everybody. I actually need to get down on the ground and test it. Without funding to do that, as you know, it’s pretty difficult.
That’s what keeps me up at night. It’s knowing we’re doing a good thing. We know we’re doing the right thing, but I’m not assured that I’m doing it in the best possible way yet, and I need to have more contact with field testing and with the people who are actually using the documents.
Helen: It sounds like the next phase will be researching the researchers and the research forms.
Thank you for all of your wonderful work doing this, Jessica. You’re an inspiration to us all, and beyond that, you offered tools to really help and a lot of concrete advice. I really appreciate what you’re doing with PRISM.
Jessica: The same back at you, Helen. You’re definitely one of my longstanding heroes in the field, and I was thrilled when you contacted me for this. It has been a fun time and I appreciate it.
Helen: Thank you on behalf of everybody for Health Literacy Out Loud.
I learned so much from talking with Jessica Ridpath and hope that you did too by listening in on this conversation.
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