Next month’s Childx conference, a TED-style event that focuses on challenges and solutions in pediatric medicine, will feature a presentation by health literacy expert Ruth Parker, MD, of Emory University. Parker’s achievements in the field include helping create a measurement tool that has been widely used to assess patients’ ability to read and understand health information, the Test of Functional Health Literacy in Adults. She is board-certified in both internal medicine and pediatrics and has a longstanding interest in how adolescents with chronic diseases navigate the shift between the pediatric and adult health care systems.
I recently spoke with Parker to get a preview of what she’ll be discussing at Childx. Conference registration is still open.
How did you first become interested in health literacy?
Early in my career, after finding that many patients could not read a simple survey I was using to solicit their experiences with emergency-room wait times, I worked with a team that developed a way to measure patients’ ability to read and decode instructions associated with everyday health tasks. For example, a pill bottle might have 2nd or 3rd grade level instructions: 'Take one pill twice a day.' Do patients know what that means?
We tested the instrument here in Atlanta, and at Harbor-UCLA Medical Center, and we found that about a third of our patients were struggling with tasks such as being able to read pill bottle, understand instructions for an X-ray, or fill out forms for Medicaid to get insurance coverage.
That work turned quickly to figuring out what we were going to do about the problem, and a lot of other voices came into the conversation. We realized health literacy is a big driver, linked to other critical issues such as disparities, costs, and the quality of the health care itself. We couldn’t improve those metrics without addressing health literacy.
What was really apparent was that all of us involved in health care had to find ways to meet people where they are, with their skills and abilities. If we have content and processes that don’t meet patients where they are, they are lost.
Is poor health literacy a patient problem, a doctor problem or both?
I think the question is how health literate are we, the people in the health care system. How good are we at helping patients understand what they need to understand and do?
The onus is on us as providers — physicians and anyone who is part of health care teams — to engage with patients. It’s a big 'we;' it also includes people who insure patients or set up any system patients have to navigate. We need to be able to take what patients need to understand and do, and make it something they can understand and do. That is what being 'health literate' is all about.
Most of us who are health care providers, especially physicians, are masters at revealing content in volume, but not as masterful at delivering health–literate content. We need to be meeting our patients where they are, providing content they can access, that is user friendly, engaging, understandable, layered, actionable, and doesn’t include a bunch of information you can’t do anything with.
In pediatrics, what are some of the common problems you see in messages aimed at patients and parents?
It depends on which patient population you’re talking about. For a mostly-very-well child, it’s pretty tough to figure out all the vaccines you need. How do you keep track of them? There are a lot of doctor visits and shots, lots to understand for someone whose child is not sick.
Another everyday task is understanding your payer: What’s covered, what your copay is, how much for medications. How do you figure that out? There are issues of transparency and clarity layered in with other issues such as privacy.
If you happen to have a child who is chronically ill, there is the added necessity to understand everything around the illness. You go to your provider and they give you some instructions, but then you’ve got to go home and manage the illness. That’s the bigger task.
Families taking care of a child with diabetes, chronic airway disease, cancer or a seizure disorder may have to understand multiple medications: how to pay for them, store them, dose them accurately, and how to administer them. It’s not straightforward, especially with children. What if the caregiver is told to give the medication, but it doesn’t taste good? How does that go?
And what about the children themselves? What do they need to understand as they age toward the adult health-care system, where they are expected to manage their condition independently?
How can we make it easier for parents to understand the instructions they’re given about how to take care of their kids?
We as providers need to be very clear about what is the essential 'need to know to do.' Often we don’t agree on that.
Then we need to focus on partnering with patients to figure out how to communicate with them. They’re the experts on what they know. We have to make sure the instructions we give actually inform them in a way that helps them. It sounds very simple but it’s not done often. The step that’s left out is that we don’t incorporate patients into the planning.
What’s the most important next step to building health literacy?
Once we’ve adopted user-centered design, then the question is how we reinforce the best content. We can leverage digital technology, although we have to be careful. A common pitfall with digital platforms is to keep layering on more content rather than providing essential need-to-know information. We need to use technology to reinforce essential messages without confusing people.
There are also enormous opportunities for broader initiatives that involve digital health care. We need to be part of that conversation. As we talk about democratization of health and make health care more available across different types of settings, those need to be health-literate by design.
I think of health literacy very much like a priming layer of paint. If you don’t scrape down what you’re painting and prime it, the paint’s going to chip. Health literacy is a primer. If you consider it from the start, you are so much better off down the line. It’s a fundamental foundation layer that can help get at our big national health goals of reducing disparities and costs and improving quality of care.
Photo by Bibi