Helen: 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 in on my conversations with some truly 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 Cindy Brach who is a lead for health literacy and cultural competence at the Agency for Healthcare Research and Quality, otherwise known as AHRQ which is part of the US Department of Health and Human Services.
Cindy has overseen the development of several very important health literacy tools, including the Health Literacy Universal Precautions Toolkit. She also is the first author of “10 Attributes of a Healthcare Organization,” a discussion paper published in June, 2012 by the Institute of Medicine. Welcome, Cindy.
Cindy: Thank you very much for having me, Helen.
Helen: Cindy, you and I have known each other and seen each other in health literacy conferences for many years. I am always impressed with the important initiatives that you lead, work on and champion. To me, this discussion paper really tops them all as it frames health literacy in terms of what healthcare systems, not just individuals, can and need to do.
Let’s take it from the top. What do you mean by a health literate organization?
Cindy: To put it very simply, a health literate organization is one that makes it easier for people to navigate, understand and use information and services to take care of their health.
I don’t like to play favorites among my projects, but I have to agree with you. I think that this potentially is a paradigm shifter.
Helen: Tell us more. It sounds like you’re using that commonly used definition of health literacy about navigating, using and access. How does this translate to an organization and not just an individual? Also, what do you mean by organizations? Is that just a clinic or hospital, or is it something greater than that?
Cindy: Why don’t I start with the second part first? In this paper, we’re talking chiefly about healthcare organizations, organizations that deliver healthcare services. We also recognize that a lot of these attributes are applicable to other kinds of organizations.
These are organizations that produce health information, health insurers, vendors of health information products, etc., but we did try to keep the focus on the delivery organizations because you can’t reach everybody all at one time.
You mentioned keeping within the definition of health literacy. It’s in keeping with the definition that you and I share and is really becoming the majority viewpoint that health literacy is not just talking about the abilities of the individual. Health literacy is the product of those individual capabilities, the demands that are made on people, and the complexity of the healthcare system and tasks that people are set.
Helen: I am just delighted that it’s framed that way. For years I’ve been using my own functional definition. Yes, I talk about the commonly used one, but the way that I frame it is that health literacy happens when patients or anyone on the receiving end of health information and providers or anyone on the giving end of health information truly understand one another.
To me, health literacy is all about that mutual understanding. It sounds as though this is shifting in that direction.
Cindy: I think that the field is shifting in that direction and that a lot of the activity around health literacy is about making things less complicated and reducing demands on consumers and patients. We know that a person’s ability to understand and use health information and access health services will depend on what healthcare organizations do. That’s what this paper is trying to address.
Helen: Where did this spring out from? As you said, this is a paradigm shift. It’s a welcome one, from my perspective, but what caused this to start morphing over to that mutual aspect?
Cindy: The field has come to recognize that this is a shared responsibility. Where the idea for attributes of the health literate organization came from was largely stolen from the model of the National CLAS Standards (National Culturally and Linguistically Appropriate Services Standards).
For those who aren’t familiar with that, over a decade ago, the Office of Minority Health and the Department of Health and Human Services published a set of standards which are not standards from a rule-making perspective or an accreditation perspective, but are a gold standard of what organizations that want to be culturally and linguistically competent should be doing.
What happened was that I said, “The health literacy field is ready for this now.” We’ve gotten to the point where people say, “Okay, I get it. There’s a lot of miscommunication going on. People’s skills are not matching the information they’re getting. We need to do something. What should we do?” This gives you a roadmap for an organization.
Helen: I really love that on a few levels. I worked in hospitals many years ago, and even when I left 17 years ago, we were going to cultural competency trainings.
In my health literacy work over the years, people would ask how the new version of cultural competence works together with health literacy. It took a while to figure out how those worked together. I think the fact that you’re putting them together now is just beautiful.
Before I forget, can you tell listeners how they can access those CLAS standards?
Cindy: The exciting thing is this whole set of enhanced CLAS standards are coming out. These are both available from the Office of Minority Health website in their cultural competence section.
Helen: We’ll put that on the Health Literacy Out Loud website.
Cindy: The great thing about these enhanced CLAS standards is that they explicitly talk about health literacy being a part of what you need to address to be a culturally competent organization.
Helen: That’s wonderful. It’s really coming in a nice circle there. You shifted over to organizations. Why do organizations matter so much in this health literacy conversation?
Cindy: We’ve paid a lot of attention to individual clinicians or to writing the perfect brochure, yet we know that even the most well-intentioned clinician or writer-editor is not going to be able to meet all of consumer’s and patient’s healthcare needs in the absence of a supportive environment.
A lot of what needs to happen needs to happen at the organizational level. We need to stop talking about individuals addressing health literacy and talk about how your entire practice, your hospital or your health system is addressing health literacy.
Helen: From all the work I’ve been doing and all the people I talk with, often it takes a committed, passionate person, often a clinician, to say, “I get it. I want to make a difference.” Then I hear from them later saying, “I went back to work. I’m just talking in this room all by myself. There’s no time for this. It’s all volunteer, and it’s not funded. What can I do?”
I hear that frustration coupled with a passion. I love how that part is coming together. Really, you need the support from the top to be able to do this. It sounds like you need that whole system.
Cindy: That’s right. You just landed on the first attribute that we call out, which is actually going to be a new standard in the CLAS standard which is addressing the importance of leadership being behind the effort.
While we all know that, most case studies of successful organizations that have launched new initiatives or turned around have incredible leadership.
It has to be more than just a passionate clinician that you mentioned because it has to be the people who are making hiring decisions and who are making decisions about time allocations.
Helen: And budget.
Cindy: Exactly. That is a foundational aspect of a health literate organization.
Helen: We just started looking at what these attributes are. I know you have 10 of them there. Can we give each one a little bit of time and attention? I want everybody to read this article, without a doubt. We will have that link on the website.
I would like to briefly touch on each one. It’s like children. I can’t pick a favorite. They’re all important, so let’s address them all. The first one had to do with leadership.
Cindy: That’s right. I just mentioned how these are foundational of a health literate organization. The graphic that’s in the paper displays each of the 10 attributes as literally the foundation of a health literate organization.
Helen: These are not prescriptive. These don’t say, “You have to do this or this.” Is this what we might refer to as aspirational, like this is where we want to go?
Cindy: Absolutely. We recognize that we are very far away from this idea. No organization is going to be able to work on all of these aspects at once. I don’t think there’s any organization out there that embodies all of these attributes. It’s going to be a long haul, but you have to start somewhere.
One of the nice things about the paper is that it gives you a menu. Under each attribute, there are a lot of different things that you can do to work on that attribute. There are resources listed that can help you. There are training resources and informational resources.
Helen: It’s wonderful to see it in the aggregate and to really appreciate how much has been happening. Let’s take this one by one. Number 1 had to do with leadership. Tell us about Number 2.
Cindy: That’s about planning, measurement, evaluation, quality improvement and integrating health literacy into all of those activities. It shouldn’t be an add-on or something you do on the side. Everything has to be part of your regular measurement activities and quality-improvement activities as well as having special projects.
Helen: That’s great. What is Number 3?
Cindy: It has to do with the work force. Hiring, training and monitoring your progress are the big elements of that.
Helen: Do you mean just the workforce, the person who is in the clinical situation with the patient, or is it a greater sense of the workforce?
Cindy: That’s such a good question. We are talking about everybody. It’s not even everybody who touches the patient, including the receptionist and billing clerks, but it’s everybody in the organization, including those executives who are making some of the decisions that we were talking about. Training should be universal.
Helen: I agree. What is Number 4?
Cindy: Number 4 is trying to be sensitive to the people that are being served and saying how important it is to include those populations. It’s not just in evaluating services, but it’s also in the design of information and services.
Helen: It’s not just about them. It’s about all of us working together. What’s Number 5?
Cindy: Number 5 is trying to strike the tricky balance of recognizing that some people need some extra help, but we also don’t want to stigmatize people. A health literate organization will appropriately allocate resources without, for example, testing individuals on their literacy.
Helen: That’s good. I’m really not a fan of that.
Cindy: Number 5 gives some ideas of avoiding stigmatizing people while recognizing the diversity of the populations you’re serving and their differing needs.
Helen: That really fits in with the universal precautions. What about Number 6?
Cindy: Number 6 is what a lot of people think about when they think about health literacy. It’s about the interpersonal communication, and it includes some of the more prominent health literacy strategies, like teach-back and encouraging questions, using plain language and avoiding jargon, and all of those kinds of interpersonal communications.
Helen: It’s interesting. As I meet people, sometimes people think if they do that, they’ve done it all. I’m glad that’s just part of it.
Cindy: That’s just one of 10 attributes.
Helen: Okay, we’re off to Number 7.
Cindy: Number 7 is all about the navigation piece, making sure that access to information and services is easy and includes electronic information as we’re increasingly going toward patient portals as a way of conveying information. Also, it’s about providing navigation assistance when that’s needed, including training people how to use these patient portals.
Helen: Is it also about buildings?
Cindy: Absolutely. Physical plant or built-in environment is an important piece of that attribute.
Helen: It’s also about access to services such as health insurance or health plans, correct?
Cindy: Yes, although we do have another attribute.
Helen: We’ll get there. Let’s go on to Number 8.
Cindy: Number 8 is about print materials, audio-visual materials, social media content and making sure that that is easy to understand and easy to act on.
Helen: How about Number 9?
Cindy: Number 9 emphasizes a priority on high-risk situations.
Helen: What would that be?
Cindy: It could be medicines, for example. We know that there are a lot of miscommunications about medicines. Some are very dangerous if they’re not taken properly or not taken at all. We need to make sure that we’re getting that piece of communication right.
Another example would be care transitions, when somebody is going home from the hospital. Again, it’s a risky situation where so many people end up back in the hospital. We want to prioritize those kinds of communications where the downside of miscommunication is high.
Helen: What’s Number 10?
Cindy: Number 10 is that one I was telling you about that has to do with health plans and healthcare coverage. The idea here is really about transparency and making sure that consumers understand what their costs are going to be before they actually agree to a service or treatment.
Helen: Costs are considered part of healthcare. That’s wonderful, the way it fits together.
Cindy, I know you’ve listened to a lot of my podcasts and a lot of the listeners have. Often I ask guests, “What would be on your wish list? What do you see in a few years?” However, I’m inspired to answer that question myself.
I’m not just asking you, but I would really love to see organizations, systems and statewide initiatives grow and grow, get bigger and really pay attention to this. They should find their place in there and start somewhere. What’s on your wish list?
Cindy: I’m absolutely with you, Helen. I would go back to the analogy of the national CLAS standards. What we saw the decade after that being published is that organizations use those standards to model their own activities. Tools were invented to try to help those organizations address the standards. I can really see industry spawning of activity around how we make these live.
Helen: They need to start in one place. It’s too big to take on all of it all at once. Just get started.
Cindy, this is remarkable work. It’s huge and massive. Did you do all of this yourself?
Cindy: Of course not. First of all, we have decades of work that we’re building on where researchers and individuals all over the country have been building up the momentum for this. I would particularly like to call out the National Action Plan to Improve Health Literacy which really takes some of the goals in that plan and carries them to the next step.
As I’m sure you have noticed, I have a host of co-authors.
Helen: Yes, they are esteemed co-authors, too.
Cindy: The senior author on this paper is Dr. Dean Schillinger, who actually wrote an earlier draft of an attributes paper commissioned by the Roundtable on Health Literacy for a workshop that we held on the attributes. At that workshop we got a lot of feedback on Dean’s paper and what attributes would mean to different kinds of actors in the healthcare system.
We used all of that to forge this paper which my colleagues and co-authors from the Roundtable have all been major partners in putting together.
Helen: As you describe this process of coming up with standards, recommendations, policy recommendations or whatever people go with this, you individually and collectively with a lot of different people along the way have started working together. It’s been an evolution and doing a little bit of this and a little bit of that, building it all together.
That indeed seems to be what all the rest of us can be doing too. We can take a bit of information here, an idea there, some passion here and put it all together and make a difference. Thank you so much for being a part of this journey and sharing it with listeners of Health Literacy Out Loud.
Cindy: It’s been my pleasure, Helen. Thank you for hosting me.
Helen: I learned so much from Cindy Brach and hope that you did too, but health literacy isn’t always easy. For help 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 enewsletter, “What’s New in Health Literacy Consulting.”
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Did you like this podcast? Even more, 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.