Helen Osborne: 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 really remarkable people, hearing what health literacy is, why it matters and ways every one of us can help improve health understanding.
Today, I’m talking with Rebecca Schnall, a nurse researcher whose work focuses on informatic strategies for persons from underserved communities.
One of her many accomplishments is researching ways that health information technology can help prevent disease, improve care and reduce health disparities for persons at risk for or living with HIV.
I learned of Rebecca’s work when watching the live streaming of the Health Literacy Round Table Meeting that focused on technology. This took place at the National Academy of Medicine, otherwise known as The Institute of Medicine.
I was so impressed with Rebecca’s work and presentation that I invited her to be a guest on Health Literacy Out Loud.
Rebecca Schnall: Hi. Thank you for having me.
Helen Osborne: You presented on apps. That’s software that’s out there. Maybe software isn’t even the right word. I guess I get confused. What is an app?
Rebecca Schnall: An app is a shortened version of the word application. I think when we think of apps most recently now, we’re thinking of mobile apps, which are really native to our smartphones and they are pretty new. Apps really came on the market first I would say about 2008.
Helen Osborne: I know them from my phone, like, “Go get an app.” Are they more than that?
Rebecca Schnall: There are web apps. Those are things that you really have to open through your browser. I think that probably the typical user doesn’t really know the difference between a web app and a mobile app.
Helen Osborne: I sure don’t. Do we need to know?
Rebecca Schnall: Not unless you’re going to go into software development, but I think as I talk about it or when you start using your app you’ll notice.
A great example is the American Airlines app. That app, when you open it, you’re in a mobile app, but then it redirects you to a web app.
Helen Osborne: Of course, I have to be doing technology. I’m not as savvy at it as you are. I’m glad you’re doing what you’re doing.
We’ve had websites and we’ve had software. Is this the newest generation of how we get information?
Rebecca Schnall: I think it is the newest generation that’s probably not so new and already on its way to be outdated.
Helen Osborne: No. Outdated?
Rebecca Schnall: I think the apps that we’re using now, the technology is so far ahead of what we’re even using now with things like sensors.
Again, it’s using the apps that we have now but really being able to detect more about what you’re doing in real time. I think we get that feeling when we use GPS-enabled apps.
If you use a Waze, that’s a very big thing in New York because we have so much traffic here.
Helen Osborne: I do. I’ve had that on my phone and then you can see all these other people posting there’s an accident right down the road.
Rebecca Schnall: Exactly. It detects where you are.
Helen Osborne: It seems to me that these are very interactive. They know where you are and it’s at this moment.
Rebecca Schnall: Those are, I think, higher level apps and all of my work is really in the health app world. Most health apps are really lower level. They’re lower level in terms of functionality, so these apps are really not doing the things that we’re talking about yet.
Helen Osborne: I want to hear about that.
I was so impressed listening to you talk about developing this app. I’m never going to be developing an app. It could well be a lot of our listeners may not be developing apps, but just tell us more. What is a health app and why do we need to care about it?
Rebecca Schnall: The utility of mobile apps or health apps is really because they’re at the point of care in the case of a clinician or provider, and in the case of a patient it’s that I now have access to health information or I’m able to record my own health information in real time.
That’s the difference of where we were maybe 10 years ago with a website and 25 years ago with picking up books or recording things in notebooks about our health information. That’s really why these have become so popular.
Helen Osborne: Let me see if I’ve got this right. The difference is that you can get it at the point of care. You can just look at the phone, so it’s extremely convenient. It’s real time, which means that “this is now,” and you can get your own information. Is that what distinguishes it from other ways?
Rebecca Schnall: I think you can get your own information and you can record your own information.
Then when we’re thinking about higher level, it’s not me recording whether or not I exercise. It’s the pedometer that’s hooked up to me that is automatically feeding the app with my information.
Helen Osborne: Those are characteristics of a health app. They may not all have that sensor built in, but that’s generally what they’re all about. What would be some common ones just to give us examples?
Rebecca Schnall: The most common health apps are really these low-functionality apps where it’s just information, so we’re just throwing information at people. It can be like glossaries, medical dictionaries and things like that.
A lot of the apps that we see now are really not capitalizing on their ability to really help people monitor and change health behaviors.
Helen Osborne: Tell us about the one you were developing, please.
Rebecca Schnall: There were two apps that we were working on with a CDC-funded project. One was for persons living with HIV and one was for HIV prevention. They were really multi-functionality apps.
In the case of persons living with HIV, it was the patient’s ability to record and access their lab reports, their medications or when they refill their medication.
In addition to that, they wanted to be able to access resources, like their housing, food, who their doctor was or when their last doctor’s appointment was.
Helen Osborne: It sounds like it’s their own information, so it becomes very much theirs as well as just “this is information.” It’s information as well as “this is all about me.”
Rebecca Schnall: Exactly.
Then in the case of HIV prevention, our participants really wanted a lot of information about testing sites where they could get tested for HIV and other STDs and also have a record of the past HIV tests so that they could have that for themselves to share with their future partners.
Helen Osborne: As I recall, in your presentation, you were talking about your specific audience, but health apps are for all of us, those of us that tend to go to devices to get information and those of us for whom this is something new. Is that correct, that this is for everybody wherever we are in this technology world?
Rebecca Schnall: Yes. I think, much like websites when they were developed and we had to talk about who was developing the website and was the information that was contained in there good and reliable, we’re having similar challenges with mobile apps.
Helen Osborne: Oh, they’re not all good?
Rebecca Schnall: Exactly.
Helen Osborne: They look snazzy. How would we know what’s good?
Rebecca Schnall: They do. I think we have to look at who the people are that are developing the apps. It’s one thing that’s important to consider.
Another thing that’s been interesting is that I’ve done two reviews on separate topics. One was on healthcare-associated infections and that’s published in The American Journal of Infection Control.
Helen Osborne: We’ll have that URL and name on Health Literacy Out Loud website.
Rebecca Schnall: There’s another one that’s not quite published yet but maybe of most interest to the listeners. It’s not the specific topic as much as the course of our review, which was only a few months.
For example, we have a review now of persons living with HIV and their self-management apps for them, and of the 15 apps that we identified during the review, four of those apps went off the market.
Helen Osborne: Oh, so they come and go.
Rebecca Schnall: They really come and go very quickly because anyone can make an app. Anyone can put it on the market. A 16-year-old in their mom’s basement can make an app and get it onto the marketplace.
Helen Osborne: That’s why I wanted this conversation with you, because chances are we’re not going to be doing what you’re doing, a few people might, but we might be talking with others about health apps, how to find a good app, how to use a good app or what the value of that is.
Could you give us some tips from the everyday, health communicator, health professional point of view? What should we know about apps that we can communicate to others and use in our own lives too?
Rebecca Schnall: I wish that there was more oversight in terms of regulation.
Helen Osborne: There’s not?
Rebecca Schnall: There’s very little, which can be good also because there’s very low risk to apps, but as informatician, I think of this as I wish this could be organized in a better way so that people could know, again like what you’re talking about, what are good apps? That’s just very resource intensive.
As apps go on and off the marketplace, it becomes an even greater challenge.
Helen Osborne: How do we even find apps? Is there a search engine for apps?
Rebecca Schnall: Yes. It’s a marketplace. Google has its own marketplace called Google Play. The App Store has the Apple apps, and then Windows and BlackBerry, but those are much smaller markets in terms of phone penetration and how many people have Android or Apple phones versus Window-based platform.
Helen Osborne: I’d love to try an example. I can hear in your voice you have a cold, so let’s use that as an example. If we had a bad cold and wanted to find the right app, what would we do to find that information?
Rebecca Schnall: Do you have an Android or an Apple phone?
Helen Osborne: Apple.
Rebecca Schnall: You would go to the App Store on your phone and you would search colds.
Helen Osborne: Would we get hot and cold as opposed to respiratory illness?
Rebecca Schnall: Probably, so you might want to look up upper respiratory infection.
Helen Osborne: We’re getting into the same problems that folks might run into with looking for websites if they can’t spell upper respiratory infection or they don’t know that that’s the same as a cold.
Rebecca Schnall: Exactly.
Helen Osborne: You’re going to have a hard time finding what you need, right?
Rebecca Schnall: Right. This may be an opportunity to, depending on who your patient population is, again, if you’re thinking about being a provider, find those five great apps that you know would be really useful for those patients who have diabetes, let’s say.
Helen Osborne: Again, like websites, it’s up to us to know that marketplace a little bit more and then make a list or provide that information for our patients and say, “You’re living with this condition. Here are some really good ones you might want to consider.”
Rebecca Schnall: Exactly. Then it’s reminding our patient that there can be confidentiality and privacy issues. Most of the apps, when you download them, have one of those little check boxes that say, “I give away my rights to X.”
Helen Osborne: Oh, the thing where we click “Agree” but never read? I’m speaking for myself.
Rebecca Schnall: Exactly.
Helen Osborne: What are we giving away?
Rebecca Schnall: You could be giving away anything or nothing, but depending on how quiet you want your disease, state or condition to be, that’s how much caution you have to use when entering information into that.
Helen Osborne: Wow. You’re dealing with a population with HIV. That’s certainly extremely privileged, private information. Is there a way that a person would not want to reveal their diagnosis?
Rebecca Schnall: In our focus groups with our participants, we had a very bimodal group, I guess we could call it, where we had people who were living with HIV for 30 years, they were advocates for the disease, they really talked about it openly and they didn’t mind sharing that information. Then we had 21-year-olds who felt, “This would completely sacrifice my chances of ever dating anybody.”
I think, like anything else, you could create a fake email address for yourself. You can create a completely fake identity for yourself, which is why some people like the internet so much because they can create a new you. You can do that with an app as well.
Helen Osborne: Are you recommending that or are you just saying it’s a possibility?
Rebecca Schnall: I’m not recommending that. I’m saying that is one.
I think that there are many apps out there that can be very useful for people to be able to manage their own health disease or health state, so if they are concerned about that information being shared I wouldn’t want them to lose opportunity to be able to use that because they are afraid of somebody finding out that they have X, Y and Z disease.
Helen Osborne: Rebecca, listening to you, I feel so cautious and leery about all of this. You talk about privacy. How do you even know a good one is out there? How do you even look up something like a cold? How is information organized? Is it just done on the fly by someone? Is this legitimate?
It sounds like you really have to be very savvy to navigate this world of health apps.
Rebecca Schnall: There are 45,000 health apps out there.
Helen Osborne: Really? I had no idea.
Can you tell us the good news? We have a lot of caveats and a lot of things to watch out for. What is the good news? What is the advantage of having a health app?
Rebecca Schnall: Again, it’s real-time information. It really gives us as patients and also as providers an opportunity to be able to manage our health in real time, and that is where we’re moving in the US. It’s to allow patients to be able to take control of their own health.
This is a great opportunity. This is a great way that you have your own lab reports on your phone and that you have control over that information.
When you go from provider to provider, now you have that information literally in the palm of your hand.
There is a potential for huge change in our healthcare system and huge improvements in people’s healthcare and management of their own health. I think there’s a lot of potential for good news.
Like with anything that’s good and that’s a very powerful tool, there are also problems with it that we need to be cautious of.
Helen Osborne: Thank you for putting that into context for all of us.
In the beginning, you said that apps are almost old news. What should we be aware of, what’s coming soon?
Rebecca Schnall: I think apps in their current form are old news. That’s what I was alluding to. I think it won’t look very different. I think we’ll still have some kind of smartphone, but it might be a watch, and the functionality will just be a lot greater than it is now.
Helen Osborne: Rebecca, even more than just hearing your presentation, hearing this conversation and being part of it, I thank you for doing all you’re doing to help make our health apps wise, sensitive and appropriate to our audience, and then for teaching us about it on Health Literacy Out Loud. Thanks so much for being a guest.
Rebecca Schnall: Thank you for having me today.
Helen Osborne: It was great.
Wow, as we just heard from Rebecca Schnall, it’s important to consider all of the ways that we communicate health information. But doing so is not 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 newsletter, What’s New in Health Literacy Consulting.
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Until next time, I’m Helen Osborne.