What does health literacy have to do with apps specifically for chronic disease? Quite a lot, it turns out.
In this episode you’ll learn about issues of engagement, accessibility, and relevance when it comes to apps for chronic disease management. You’ll also learn three things you can do to bring into focus the health literacy qualities of any apps you’re recommending–or designing.
Today I’ll be giving a plenary session on health literacy at the Chronic Disease Symposium in Myrtle Beach. I’m grateful to South Carolina Dept of Health and Environmental control for inviting me. This episode is a 10 minute dive into an issue I will only get to mention briefly in my talk. That’s health literacy concerns when it comes to apps specifically for chronic disease.
I’ve been including apps and other digital health tools in my health literacy activities lately. I am still reading, and listening, and talking, and thinking from my position as a literacy researcher and educator in health literacy. And I’ve encountered plenty of issues while reading across research on health literacy and chronic disease. Here I focus on apps.
It’s well recognized that apps are everywhere and can be helpful. One systematic review of communication within diabetes self-management apps puts it this way: “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.”
But it’s all not sunshine and roses. Despite loads of support and the contributions of many smart people, most Internet-based consumer health information is still written in a way not accessible to most Americans. So Keep that in mind as we look into the research on chronic disease apps specifically.
There’s questions of engagement.
In one review of literature around user engagement with mobile- and web-delivered self-care interventions for adults, the authors go ahead and state the obvious for us:
“Technology-delivered interventions can improve the health behaviors and clinical outcomes of persons with diabetes, but only if end users engage with these interventions.”
That’s right! There’s questions of usability.
A 2014 study evaluates diabetes mobile apps for health literacy design and functionality. The authors found that “it is questionable how relevant and appropriate these types of health information technologies are for people with low health literacy.”
What I admire about that statement is the emphasis on the importance of HIT being relevant and appropriate.
those key concerns are also taken up in a scoping review on the health literacy features of mobile apps targeting women with gestational diabetes. The study agrees that “Mobile phone apps can provide time- and cost-efficient personalized interventions.” However, the authors ask developers to improve their considerations of health literacy 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.”
What strikes me as a key issue here is matching tools and their content to target audiences. As an educator that phrase “what works” always bugged me. Well what works for whom and under what circumstances? I doubt very much the teams who are building these apps are intentionally making them work well for just some people. Addressing these incidental blind spots was the subject of our most recent podcast. And the way forward involves participatory design that pays attention to health literacy!
It’s fun to talk to people and find out what they already use, do, say, read, watch, have, value, and want. Like, during the development process. As it turns out, it’s also an approach to reducing health disparities. Two studies address this directly.
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.”
Similarly, a 2016 study on the acceptability and usability of mobile applications for diverse patients was conducted because
“little is known about their [apps] acceptability and usability for low-income, racially/ethnically diverse populations who experience a disproportionate burden of chronic disease and its complications.”
So these researchers did just that. They recruited a diverse set of participants and did usability testing of the 11 most popular health apps. They 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.”
It sounds smart to me to involve varied participants in design, in order to enhance usability as well as relevance. All of the major federal agencies and professional organizations that have made recommendations on how to write health literate apps––all of them agree on the importance of having a range and variation of users in the development and testing process. And, on including questions or prompts about health literacy.
While I’m talking about users from varied communities, let’s park it on community for a moment. As your own experience probably tells you, we ‘users’ don’t often use tech alone. Have you ever passed your phone around and talked about what was on it?
Similarly, health literacy is a group endeavor. We already know that family and larger social groups are part of what makes up health literacy. even patients with literacy difficulties draw on a broad range of strategies and skills when it comes to understanding their health situation and navigating the health system. And those strategies and skills very often involve other people. Like friends, family and online communities.
So we might have expected the same when it comes to health literacy in digital environments. And sure enough, people rely on family support when using technology!
For instance, the earlier study I mentioned about patient portals, health literacy, and adults with diabetes found that: “Participants reported family members facilitated access and usage of HIT, taught them usage skills, and acted as online delegates.”
All these studies [links in show notes] draw attention to who developers think the users are, and to what extent they are including concerns about health literacy in design. These turn out to be consequential decisions that merit close attention and–dare I say–collaboration.
This is because as is being discussed recently in popular and social media, and professional circles, we can run into problems when assumptions about the users’ race, class, and gender are not looked at closely. I suggest the same is true for assumptions about users’ language, culture, power. Those are health literacy issues as well as healthcare issues, related to disparities. That’s part of digital health’s promise, reducing health disparities.
So what can you do? Whether or not you’re a developer? Here’s three suggestions:
#1. One of the studies I mentioned earlier made a recommendation that stood out to me: “using a technology that can be more easily integrated into users’ lives.” You know I’m a big fan of starting where people are. This also applies to digital! How can you leverage the tech they’re already using, the apps they already frequenting, and the ways they are using digital tools in their lives already?
#2. As I said earlier, let’s take a look at the assumptions about the users that were built into the tech. Let’s see who was unintentionally left out of these conversations in the design process. Who wasn’t this tested on? Who’s it working for, and who is it not really working so well for right now? Match the answers to these questions to what you know about your patient population, and choose your next steps wisely.
#3. Remember that literacy and learning are social. Even in the individual patient encounter. So, find out who your patient talks to most frequently, or who in this persons’ life, they turn to when they need help with health decisions. And encourage that person’s involvement with the app!
If you or your organization want support in any this, write me at Annemarie at h-cpartners.com. find me on twitter @amliebel, or go to healthcommunicationpartners.com. This has been 10 Minutes to Better Patient Communication.