Opening Panel: Deeper Dive: Signposts on the Road to Health Literacy’s Future

Panelists:

Rima Rudd, Sc.D (Rima) – Senior Lecturer on Health Literacy, Education, and Policy, Harvard School of Public Health

Cliff Coleman, M.D., MPH (Cliff)- Assistant Professor of Family Medicine, Oregon Health & Science University School of Medicine

Susan Reid, M.A. (Susan) – Director, Health Literacy New Zealand

Marin P. Allen, Ph.D. (Marin) – Deputy Associate Director for Communications and Public Liaison and Director of Public Information , National Institutes of Health

Michael Villaire, MSLM – CEO, Institute for Healthcare Advancement (Moderator)(Michael)

The panel discussed the current level of health literacy penetration in the U.S. healthcare system and identified some objectives and best practices to strive for in the next 10 years. Following is a summary of questions posed by the Moderator (Michael) and answers from the panel, with some key points bolded.

Question: Where do you want to be in 2026?

Rima: Literacy has become an important variable in health research. We need to go much further into looking at the skills of the communicator, difficulty of materials and context, etc. How do we transform the system to reduce disparities?

Cliff: We have done a disservice to patients by ignoring our responsibility in patient understanding. Rather than putting onus on patients and caregivers, we need to turn the spotlight on ourselves.

The State of training for practitioners: There’s a sizable minority of programs training health professionals – less than half. There’s a giant lack of faculty skill in this area. Academic institutions are not as aware as they should be. And the schools teaching health literacy are not teaching it enough. In a 4-year curriculum, they’re teaching about 3 hours on how to communicate with patients. Out of 362 attendees at this conference, there are only 7 physicians. Doctors don’t know what they don’t know: they don’t know what HL is. And they think they are already good communicators. The ones who think they’re the best communicators are rated lowest by patients.

Rima: Doctors who take a year to get an MPH are growing in numbers. There is lots of enthusiasm among young doctors.

Cliff: There are still physicians who think HL does not apply to their populations.

Marin: HL for the individual saves lives, for the physician it saves time; for the system it saves money. We need to equate HL with these facts. We needed to prove the connection. In the future we need to bring the knowledge we already have into the field and think globally, bringing the whole world in. (There are more than 300 languages spoken in homes in U.S.) The work needs to be more comprehensive and more universal.

Michael: HL field needs to work much more closely with the reading field, as Ceci Doak has said for years.

Marin: We need to bring the knowledge of how adult learners learn to the field.

Susan: I come to HL from 24 years in Adult Literacy. We focus on a strength-based approach (rather than a deficit approach). We need to draw on our adult literacy background in relation to listening, speaking, numeracy, and writing. We need to collaborate and make sure all disciplines come through: We stand on and draw on a large range of fields. How do we use that, rather than reinventing the wheel, is the question.

Michael: We need to keep respect in the forefront. We need to bridge the communication gap with those of other cultures, backgrounds, etc.

Question: What are the areas where we haven’t gone and should go?

Rima: HL practice has not sufficiently ventured into public health. Our work has stayed within the institutions of health care. But we have to spend more time in the community, in homes, in workplaces, on key issues such as air and water quality. We should engage with people working in environmental health and others. We may need to be more qualitative and creative in our approaches. We need to get outside, breathe the air, and comment on it.

Michael: We should do as President Obama did: He drank the water in Flint, MI.

Susan: We need to hold a mirror up to organizations to get them to look at what they’re doing. Health care needs to give up its culture in order to work with the community, rather than just “doing things to” the community. We need to shift power.

The health care system in New Zealand is very different from the U.S. It’s much simpler.

Marin: After Fukushima, the Japanese government lost the public trust in 3 days. They have been investigating what happened. Together with a researcher in Boston, they got citizens in Japan to measure radiation levels. It may not have been ideal, but it engaged a lot of people and made data available. There is so much to be done with community engagement. “Active listening” is important to moving forward.

Cliff: We need to get out of our “silo,” get out of institutions and engage with the public. How do we describe what we do? It takes a long time. How do we get the public to understand and get excited about it and exert pressure from the outside? How do we teach the public to get excited?

Marin: Let’s get young people excited about the field.

Michael: We can collaborate with groups that work to make science understandable to the general public.

Marin: Alan Alda is using theatre games in his Stonybrook program to teach science.

Susan: Health professionals overestimate their effect, especially on chronic conditions. We have to acknowledge people doing a good job of taking care of their health, rather than just pointing out what they’re doing wrong.

Michael: Think about ways you can partner with other groups in your community.

Question: What obstacles and challenges do we face?

Rima: One obstacle was lack of scholarship, not learning from my colleagues. I had faulty assumptions about how to get there. It’s not a foot race, but rather walking with colleagues. Another one is lack of patience. A third is entrenched interests: We need to look at policy and policy change, and regulation of materials, testing of materials before releasing to public. We need to engage the policy sector to bring about mandates and regulations.

Michael: When we encounter an entrenched interest, we have to engage them in figuring out what we are trying to achieve with the barriers we have put in place, and how we can do better to achieve the overall goal.

Cliff: We have some catch-up to do in providing an evidence base for our work. Health care professionals won’t listen if there is no data. We need to show that HL changes outcomes for patients.

Institutionally, there’s no incentive for clinicians to get things right the first time. If the patient doesn’t get it the first time and has to come back for a second visit, the physician is rewarded for this.

Marin: There’s no funding to support policies. We need to look for opportunities for policies to have definition, funding, or at least some activities to support them.

Michael: What gets done first is what we get paid to do. There is funding for research into health literacy. There need to be incentives for the practice.

Susan: The code of patient rights in New Zealand says that the patient has the right to understand risk, but we’re still very bad at it.

Marin: We’re not successfully communicating risk. We have to find a real way to explain risk without scientific terminology. We need to show risk over time, pre-conditions: Understanding and explaining risk is a challenge.

Rima: Baric, an English health educator writing 30-40 years ago, said that we have the illusion that the notion of risk has the same power as the feeling of pain. Understanding risk is not necessarily linked to action. What we’re not doing is making the understanding of risk actionable: What can they do with the information?

Cliff: I need to be able to know when a nurse, physician or therapist is competent in clear communication. So that 10 years from now we can have measurable standards in our degree programs.

Rima: What can I do now to help us get where we want to be in 20 years? I want to work with young people, to pass on the mantle, to run with it, expand it, and change it. I want to work together, co-publish, work with young people.

Marin: 1 in 6 people in America have a communication disorder of some kind. We need to think of these people who need to have the health literacy models work for them. It’s more than translation or handing someone a form.

Susan: In the future, I want to share the generosity of my HL colleagues with the community – YOU, and with communities, as well as others in HL field.

From the audience: Janet Ohene-Frempong: We need to support providers in communicating clearly.

Cliff: We need to incentivize the practitioners to practice their HL skills with patients.

Marin: We need to figure out what incentives work.

Rima: We need a common language for scientists, practioners, and the general public.