“Well, like the food for instance, it wasn’t a very extensive list of what you could eat, it was very limited and most of the food I eat wasn’t on it…”
(participant, Carolan Gill & Steele 2012)
You can’t be in health communication and health literacy without hearing about chronic disease, non-communicable diseases, and disease prevention.
Over the course of the last year or so, I’ve spoken with a diabetes prevention educator, developers of a glucose monitor app, and fellow members of a WHO community of practice on NCDs and health literacy.
This article is my attempt to thread a line through conversations I’ve had, and some research I’ve read, on health communication and chronic disease–with an eye toward health equity. I’ll tell you about the quote at the start and why it leaped out to me.
And at the end I’ll leave you with one thought to keep in mind when you’re working with your next patient or client.
Strategic connections in high-stakes communication
First off, I am reading, and listening, and thinking from my position as a literacy researcher and educator in health literacy. And I’ve encountered plenty more issues than I can get into here while reading across health communication or health literacy and chronic disease.
I’m aware—and I bet you are too—that there are multiple and sometimes competing discourses regarding the nature of chronic disease. There are different empirical and ideological approaches, and everyone has good reasons for their perspective.
And this makes sense, as chronic disease and NCDs are global health problems. They’re societal problems. And they’re also deeply felt human problems. Many of us live with chronic disease, or love people who do.
So it stands to reason that health professionals’ communication with those people directly affected is crucial, complex, and deserving of all the attention it gets.
One of my earliest conversations about disease prevention was with Leighton Norvell, the Diabetes Prevention Program Coordinator for Prisma Health Midlands in South Carolina. Leighton told me her clients were interested in learning “from others with the same background, family history,” and that this strongly shaped her practice as an educator.
Leighton’s approach, she described, was
“meeting them where they are, being compassionate, encourage them to have a voice. This is facilitation, not teaching!”
I admired her passion and her approach. And not just because she has great results (which she does).
Because an important approach in health literacy and in adult education overall is connecting whatever information you have, to what the person (or community) you are trying to reach already values.
That’s right, starting where people are. With what they are already doing. This is something you’ve heard from me before. And it’s something this educator and others grasp.
If you’re curious on how to do this, let me recommend Moll & Gonzales’ “Funds of knowledge.” This is an approach that builds “strategic connections” between you and those you serve. It’s a well-known way of “capitalizing on household and other community resources.” Here’s the original 1992 article and 2005 book.
Problems in digital communication
This conversation with Leighton has stayed with me, and shaped how I thought of communication within diabetes education.
Lately, I’ve expanded my focus to include apps and other digital health tools. Because, as this systematic review of communication within diabetes self-management apps observes, “Patients can benefit from support from health care personnel in their self-management, and the traditional communication between patients and health care personnel is changing” with the prevalence of smartphones and apps.
But it’s all not sunshine and roses.
This 2016 study on the acceptability and usability of mobile applications for diverse patients points out an important tension in the digital health field:
“Mobile applications or ‘apps’ intended to help people manage their health and chronic conditions are widespread and gaining in popularity. However, little is known about their acceptability and usability for low-income, racially/ethnically diverse populations who experience a disproportionate burden of chronic disease and its complications.” (emphasis added)
The researchers recruited a diverse set of participants for their usability testing of the 11 most popular health apps, and conclude that “current tools are not consistently usable for diverse patients.” So, “app developers should employ participatory design strategies in order to have an impact on chronic conditions such as diabetes and depression that disproportionately affect vulnerable populations.” Involving varied participants in design, in order to enhance usability? Sounds smart.
Health literacy and varied audiences
Turning to health literacy of apps, research findings strike a similar note of caution about usability. This 2014 study evaluates diabetes mobile apps for health literacy design and functionality, noting that “although the surge in the development of diabetes apps and smartphone ownership continues, it is questionable how relevant and appropriate these types of health information technologies are for people with low health literacy.”
It’s clearly important to keep our eye on issues of culture and equity in the explosive field of digital health. This scoping review on the health literacy feature of mobile phone apps targeting women with gestational diabetes agrees that “Mobile phone apps can provide time- and cost-efficient personalized interventions for GDM.” However, the authors stress that “Consideration of health literacy should be improved when developing features of the apps” because:
“Even if the apps provide high-quality, evidence-based content, the value is limited if the information does not adequately match and address the usability, accessibility, readability, and health literacy needs of target audiences”
I’m intrigued by some of the findings in a review of literature around user engagement with mobile- and web-delivered self-care interventions for adults. The authors remind us of the obvious (rather eloquently!):
“Technology-delivered interventions can improve the health behaviors and clinical outcomes of persons with diabetes, but only if end users engage with these interventions.”
Among their recommendations for intervention design choices, one stood out to me: “using a technology that can be more easily integrated into users’ lives.”
Hmm…sounds like ‘starting where people are!’ And one fun way to do this is to, y’know, talk to people.
Like, during the development process.
Starting where people are
A 2010 study on patient portals, health literacy, and patients with diabetes and other chronic diseases recommends careful user participation in design, concluding:
“in the absence of participatory design efforts involving those with limited health literacy, those most at risk for poor diabetes health outcomes will fall further behind if health systems increasingly rely on internet-based services.”
Because it’s important to build interventions based on what people already have, know, and do.
For instance, another study about patient portals, health literacy, and adults with diabetes had a significant finding that emerged spontaneously during focus groups:
People rely on family support when using technology!
We already know that family (and larger social groups) are part of what makes up health literacy. When confronted with complex health-related experiences, patients with literacy difficulties draw on a broad range of strategies and skills to understand their situation and navigate the health care system.
So we might have expected the same when it comes to health literacy in digital environments, as those study authors found: “Participants reported family members facilitated access and usage of HIT, taught them usage skills, and acted as online delegates.”
It’s time to return to the quote that opened this article from this compelling study of women’s experiences of gestational diabetes self-management. And I’m hoping by now I’ve made the connecting thread through this article clear enough to see.
“Well like the food for instance, it wasn’t a very extensive list of what you could eat, it was very limited and most of the food I eat wasn’t on it…”
Giving people advice that has little to do with their lifestyle might be like using words that have little to do with their world.
So ditch the deficit perspective. Instead, start where people are. Ask them what they are already doing, what they already know and have. And work from there.
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