Health Literacy Milestones and Opportunities (HLOL #55)

Dr. Ruth Parker is Professor of Medicine and Public Health at Emory University in Atlanta, Georgia. She is nationally recognized for her efforts in health literacy research, education, and health policy.

Dr. Parker’s accomplishments are many, including helping to develop the TOFHLA (Test of Functional Health Literacy in Adults) and co-writing the health literacy definition included in many publications and initiatives including the U.S. Patient Protection and Affordable Care Act (otherwise known as “Health Care Reform”).

In this podcast, Dr. Parker talks with Helen Osborne about:

  • Why health literacy matters so much to her, and everyone else.
  • Health literacy milestones, especially in the past ten years.
  • Health literacy opportunities ahead in this era of health care reform.

More Ways to Learn:

Click here for a transcript of the episode.

Transcript:

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen on my conversations with some pretty amazing 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 Dr. Ruth Parker who is professor of medicine in the department of medicine at Emory University School of Medicine. Dr. Parker is nationally recognized for her health literacy research, teaching and advocacy.

Dr. Parker’s accomplishments are many, including helping to develop the TOFHLA, or Test of the Functional Health Literacy in Adults, and co-writing the widely used health literacy definition that is in many prominent publications and nationwide initiatives, including the US Patient Protection and Affordable Care Act, otherwise known as Healthcare Reform.

Dr. Parker servers on numerous health literacy panels and advisory boards and has won many awards for her health literacy work. If all of this doesn’t keep her busy enough, Dr. Parker is a marathon runner and an advocate for women athletes of all ages.

Welcome, Dr.Parker.

Dr. Ruth Parker: It’s nice to speak with you Helen.

Helen Osborne: You’re speaking with me, and we have listeners from everywhere listening in on our conversation. I’m so glad to have this opportunity to talk with you. You do so much work in health literacy and have for so long. Why is it so important to you?

Dr. Ruth Parker: It started as kind of a little, lonely endeavor. There were a few folks out there that you know well. Terry Davis and Barry Weiss were certainly out there thinking about how many things are written so much above the level of the patients that we’re trying to help their ability to understand and act on them.

I came into this probably 20 years ago when I was actually involved in working on something totally unrelated with a colleague of mine. He was looking at waiting times in the emergency rooms and how long it took to get cared for in a big, urban public health hospital setting.

What we noticed in a little survey we were giving folks was how quickly they would come back to us and how there just wasn’t time for patients to be able to read them and understand them.

I turned to a hospital administrator, and I remember saying, “Gosh, can our patients read?” He turned back to me and said, “Yes, most of them can.” I said, “What is most?” He said, “I don’t know, two-thirds or so.”

It really just struck me that I had gone all the way through medical school and residency and was practicing and teaching internal medicine as a faculty member, and I had never stopped to think about whether or not people can understand all of the information and all it takes to be a patient.

Helen Osborne: That was your aha moment.

Dr. Ruth Parker: It was an aha moment. I turned to some people who knew a whole lot about it. There certainly are a lot of people that this is no secret to. They’ve been thinking about it and working in it.

The people I turned to were actually from Georgia State University down the street. I learned from those who live in the world of literacy and all that is known about how many people really do not understand what they need to be able to understand to act and that literacy is functional. It is context and setting specific.

Over the next several years we worked on developing a tool for measuring it and then measuring it. Then we worked with others to look at associations. Over the last five, seven to 10 years, we’ve been trying to figure out what in the heck we are going to do about it.

It’s been a long haul with a lot of great accomplishments, but there’s still a lot more to do.

Helen Osborne: There is. I appreciate hearing your story from the beginning. I can resonate with that as well. About 15 years ago, I was in practice myself, and I got bitten by that health literacy bug. It was maybe building on work that you had already started.

This was after reading an article that I found in JAMA, Journal of the American Medical Association, by Williams et al, saying that about half the adults in this country struggle to understand printed information. I looked at the patient population I was treating at a community hospital in Boston and said, “What can I do about it?”

Dr. Ruth Parker: Many of us in the early phases were really trying to figure out how we could quantitate the problem and put reliable numbers as to just how big a problem it was, defining it, putting some words around it, and identifying the prevalence and how common it was.

There were people out there who knew it was real, but we needed the data to back that up. Then we needed to put some studies beside it to say, “What does this mean? How is this related to what we’re seeing about peoples’ understanding of chronic diseases, self-management and outcomes of various sorts?”

I think there was a good decade of work to really amass that information, but it was pretty exciting with the IOM report that came out.

Helen Osborne: The Institute of Medicine report.

Dr. Ruth Parker: Right, and also a lot of other people were coming to the table with various backgrounds saying, “This looks real, but what are we going to do about it?”

It’s pretty exciting to take it from something that’s now recognized as real to saying, “What do we do with that and how do we begin to go after something that is this big of an issue for so many people?”

Putting the mirror on ourselves, those of us who are involved in providing health information, health services, medical care and public healthcare, what can we do to make ourselves more health literate and more understandable?

Helen Osborne: That’s something I think about a lot, the fact that it takes all of us together. Some people bring the research, some people bring the policy, and some people bring the programmatic parts of it.

There is an article of yours that you co-wrote with Scott Ratzan that came out recently. It’s called “Health Literacy: A Second Decade of Distinction for Americans.” It was published in the Journal of Health Communication in 2010. I just think that this is a brilliant overview of what’s been happening in health literacy in the last 10 years.

There’s a sentence in there that particularly resonates with me, and that is, “Health literacy has grown from an under-recognized silent epidemic to an issue of health policy and reform.” I wonder if you could help walk us through exactly how that has happened.

When I look at this wonderful chart you have in there of all that’s happened in the last decade of health literacy, what are some of our milestones?

Dr. Ruth Parker: Helen, you’ve certainly been there at the table and heard a lot of this as it unrolled, but it was probably back in the year 2000 that Scott and I put out the definition for the National Library of Medicine. It went in their current bibliography.

Helen Osborne: You put out the definition of health literacy?

Dr. Ruth Parker: Correct. It was important to have a definition even though there is always going to be discussion and room for improvement, but we needed to put something together that people could come around.

That definition went forward in Healthy People 2010 and was picked up and used by the NIH and the Institute of Medicine for the report that our committee was working on. We had this definition and we started moving forward around that.

Very central to this was the inclusion in Healthy People 2010 early on of a couple of objectives that specifically were around health literacy.

Helen Osborne: Can you give an example?

Dr. Ruth Parker: The main one probably had to do with improving the health literacy of persons with inadequate or marginal literacy skills. That was a specifically mentioned objective. That, of course, helped set some of the policy agenda for federal agencies that are working under the guidance of Healthy People 2010 and what it does for setting a public health agenda for our country.

There were some other very important initiatives that started happening as well. Health and Human Services created and began to have a work group across agencies.

The IOM came out with a report in 2003 that was also really important. It linked health literacy with self-management as a crosscutting priority for the country for transforming healthcare quality to the 21st century.

This was really important because it meant not only is taking care of and self-managing your health a priority but you have to understand what it is you need to do.

These were crosscutting across all the priorities for transforming the quality of healthcare, with quality obviously being one of the main policy goals for health in our country.

That came out in 2003 before we had the health literacyInstitute of Medicine report which was published in 2004, “A Prescription to End Confusion.” Like I mentioned, that did use the definition that Scott and I had put out back in 2000 for the National Library of Medicine.

That report went a long way to lay out specific recommendations and was just a sentinel event in helping to frame health literacy for the country as well as lay out some concrete recommendations.

Helen Osborne: As I look back on my journey with health literacy, I see that Institute of Medicine report as a real turning point. It’s a time when it went from, “What is health literacy?” which is the response I got from others, to “Health literacy: What are we going to do about it?” It’s interesting to see how all of this has been leading up to that. What happened after 2004 to take us to now?

Dr. Ruth Parker: The IOM report in 2004 requested more research. We were fortunate to have the National Institute of Health and the Agency for Healthcare Research and Quality issue a program announcement with review. This stimulated the beginning of some federal funding specific to it.

That was so important to stimulate the work of many to try to advance what it is we can do about the problem. That was first issued in 2004 and was reissued in 2007 and again in 2010. With that, we saw more and more people coming to the table and being involved.

The Institute of Medicine continued their good work of pulling together stakeholders by creating a roundtable. Since 2006 they have met at least twice a year, bringing together people around all kinds of issues related to what we know, what we need to learn more about, who the stakeholders are and what we can do.

They’ve also published a series of workshop summaries that have helped to raise awareness and educate. They have looked at specific issues like quality of care and prescription medication labels.

Helen Osborne: I have been to some of those, and they are really impressive. They are very fast-paced. Every 15 minutes somebody different is presenting. I just go to listen in and sit on the sidelines. It’s very impressive.

Dr. Ruth Parker: It has drawn a lot of people from different constituencies. One of the last ones we had had to do with a state-based approach. It was held out in California. It’s a wonderful venue. We’ve got another one that has become very active on health reform, looking at what the opportunities are and what we could do with that.

It’s a wonderful opportunity to bring together stakeholders from multiple constituencies who are vested in doing something to address the issue and to continue to make this a part of the public health agenda for the country. I’m always incredibly grateful to the IOM for their convening and continuing to support the efforts of all types of people who see this as a real issue for us to be engaged in.

Helen Osborne: I’m looking at your article now. There are so many more landmarks and milestones along the way. I also want to get to what the opportunities are ahead. You talked about the Affordable Care Act, otherwise called Healthcare Reform in the US. Where does health literacy fit in in that?

Dr. Ruth Parker: It was certainly wonderful to see the definition of health literacy actually written into the Affordable Care Act, the ACA as many call it, and to have that definition included. It’s very extensive legislation and there is a whole lot in it. I think most people are still trying to digest what all is in it and what does it mean for me?

We did have a recent Institute of Medicine roundtable workshop where we focused very specifically on health literacy implications of the Affordable Care Act.

In addition to noting that the definition was in there, we were able to identify through a white paper that was presented at that workshop where there is direct mention of health literacy relating to research and the dissemination of research in order to get information out to the people that it can help and who might benefit from it.

It went into shared decision making and what it means to share information between providers and patients as consumers of health and healthcare. It also covered medication labels, which patients need to be able to pick up and understand on an everyday basis as they self-manage all types of conditions.

In workforce development, for those of us who are involved in providing health and healthcare, what is it that we need in order to be confident as health literacy providers? There again, the emphasis has more recently been on those of us who are involved in the delivery of health and health information. How health literate are we?

We spent a lot of time early on defining the public and saying, “What do we know about the skills and the abilities of the public?” I think it’s very exciting that in the last five to seven years we’ve really been willing to turn it the other way.

We can say as we move toward interventions, “What is it that we can do to make ourselves health literate and understandable and to make sure that what we tell people is actionable and meets them with their abilities and skills to use the information?”

Helen Osborne: That’s how I am seeing the health literacy definition evolving. It’s as looking at the alignment between the needs of the system and the needs of the individuals.

Many people email me and ask, “How do I measure health literacy of my colleagues? I want to do some training. How do I figure that out before and after?” Under this workforce development part, do you have any ideas or recommendations for us?

Dr. Ruth Parker: I think that is still very much an evolving area. It’s on the horizon and we’re seeing it mentioned. We’re seeing people talk about it. Certainly awareness and understanding of the issue is a first phase.

Then you get into the nitty-gritty. What exactly does it mean? Helen, I think you would be a good one to say. You know it when you see it, but how do you measure it?

We also know that what gets measured gets done. That’s really true from an organization or a system level. If we want to see impact on something that’s as big a problem as health literacy in our country, we need to have ways to measure it and to gauge it.

Helen Osborne: I actually comment that the opposite way. I’m more on the practice side of what I do. Some things right now are hard to measure, and I see these standards where things need to be written at whatever low grade level they can come up with and it frustrates me time after time.

Just because you reduce the number of syllables doesn’t make something easy to understand, but it’s easy to measure. How would you go about balancing between the need to measure something, and I appreciate that, but finding the right things to measure?

Dr. Ruth Parker: I think you’re right, and I think ultimately the goal is to measure the alignment. How well does what you need to be able to do align with the skills and abilities of the people who need that information?

What we really need to know is how well aligned are we? How good a job are those of us who are putting out all this content doing at aligning that with what people need?

A very simple example I think, is to take a look at a pill bottle. You pick up a pill bottle, and very commonly you will see an instruction that would say, “Take one pill twice a day.”

What’s the reading grade level requirement of that? It’s very low, but then you and I could immediately say, “What is twice? Is twice in the morning? When is the morning? Is it morning and midday? When is midday? Is it 8:00 a.m. and 8:00 p.m.? Does it matter in terms of how the medication works and its safety or efficacy?”

If it matters, why doesn’t it specify that on a bottle that is given out so commonly, every day in our country and varies across state lines?

The question is how well are we as providers doing at offering to the people who need it something that is understandable, actionable and actually useful? We’re flunking.

How do you measure and capture that? You capture it when you don’t have a problem with the misalignment any more. How do we go about coming up with useful gauges and measures?

We’re struggling with that. I think this is doable, but I think it is all still part of being nescient and also being new to realizing what our ultimate goal is.

Helen Osborne: That’s what I was wondering about. What is this goal? You’re a marathon runner. You know that 26.2 miles, or whatever it is down the road, there’s a finish line. What is that finish line we’re all running toward?

Dr. Ruth Parker: The finish line is the alignment. When what you need to know to understand, know and do for your health meets you with your own skills and abilities across various skills and abilities, everybody gets it because it’s presented in multiple ways with reinforcing messages that mean the same thing. That’s the art and science of communication.

You would probably agree with me that we’re masters at putting out volumes of content. We do it more and more, but more is not always better. More is just more. What we really need to do is understand what the essential need to know to do is.

For example, with the pill bottle it’s the real meaning. It’s take one at 8:00 a.m. and at 4:00 p.m. If we know that, we can find a way to say it. “Take one twice a day” is not clear by its inherent nature, yet that’s what’s on the bottle. That’s a very simple example, but it’s so common.

Helen Osborne: It is so common. It’s everywhere. I see another problem ahead is that it seems to be a moving object, what it is that we as patients and family members need to understand, such as nutrition information. Some days it’s good to eat this kind of food. The other day don’t eat that kind of food. It’s constantly changing. Maybe that’s why we have so much information out there. It’s confusing.

Dr. Ruth Parker: It’s confusing, and what we do is put out lots of information. Just because it’s content doesn’t mean that it’s good. I think that many people just begin to ignore it because they don’t know what to believe, why to believe it, what is really valuable and what is really necessary

I think in general, people care about their health and are vested in it. They want to be healthy. We’ve said over and over that it really is hard to be a patient. It really is hard to know what to do.

It’s so incredibly easy to make a mistake, mess up and lose trust in knowing what to believe and why, especially when information that you may need is not even accessible in terms of its navigability or understandability. The clearer those of us who care about this are about what the essential need to know to do is, the better.

It’s not only taking an entity like your diet, care for your diabetes, care to get to the optimum weight or the optimum approach to your own fitness. Once you know what you need to know, it’s understanding with clarity what that is, what that means and then finding a way to communicate that so its meaning is accessible to people of various literacy levels.

Helen Osborne: I wonder if you could help. For all of us who are advocates of health literacy, for our listeners who really are passionate about the topic and want to make a difference, how can we challenge people? What can we give them to do that maybe could make a difference tomorrow, not just way down the road?

Dr. Ruth Parker: I think for all of us who care, it comes down to figuring out who it is we’re trying to reach with whatever it is we’re doing. Are we looking to address individuals or an entire system that provides health information or health services?

We can take wherever we are and say, “What is it I’m trying to communicate? What is the evidence for it? Do I understand what the message is? Do I understand the real nitty-gritty of this?”

Take that and make sure that people across levels of understanding can understand it, and then find multiple channels that reinforce that. Use print, but beyond that, how do we reinforce evidence-based content and make it accessible across levels?

We have to do this up front. So much of what we do is try to retrofit and take content that’s out there and say “People didn’t understand this. How do we make it fit now?”

We’ve already lost a lot of our audience in that approach. If, on the front end, we work to make things understandable, actionable and accessible rather than trying to take volumes of content and retrofit it, we’re going to find it easier.

We’re still trying to figure out what that process really looks like. There are some people doing it and doing it effectively, but the real challenge is to make this seamless. This needs to become a part of what we do all the time.

Helen Osborne: Do you see us getting there?

Dr. Ruth Parker: I absolutely do. Look at the opportunity for enrollment of all the people who currently don’t have health services. Under the opportunities to reform, we could take the process of enrollment and make it on the front end a process that people understand, navigate and recognize.

We can make it process that’s not something that tries to do the same thing hundreds of different ways and becomes just inaccessible by its own design.

Helen Osborne: I thank you for all of that. You really are bringing that whole big picture and big vision. You’re working on policy and research at the highest level, but you’re also giving us that how-to information so we can make a difference wherever we enter this conversation. You’re making it very accessible for us to understand, follow and do.

Thank you so much for being a part of this podcast but also for helping champion the cause and lead the way for health literacy.

Dr. Ruth Parker: It is a pleasure, Helen. Thank you for getting the word out. There are wonderful people working on this, and it’s a lot of fun. We welcome others to the table. It’s a delight to chat with you about it.

Helen Osborne: We will be having some of the references that you mentioned on the Health Literacy Out Loud website. Thank you very much.

I learned a lot from Dr. Parker and hope that you did too. Health literacy isn’t always easy. For help in clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free e-newsletter, “What’s New in Health Literacy Consulting.”

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes as well as the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.

Did you like this podcast? More importantly, did you learn something new? If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.

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