HLOL Podcast Transcripts

Health Literacy

Making Personal Health Records Accessible to All (HLOL #153)

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 about health literacy with some pretty amazing people.

Today, I’m talking with Madeleine Rothberg, who works at the Carl and Ruth Shapiro Family National Center for Accessible Media, or NCAM, at the public television and radio station in Boston, WGBH.

Madeleine works to ensure that multimedia and information technology is accessible to all users, including people with disabilities. One of her many accomplishments is leading the Accessible Designs for Personal Health Records project.

I’m a docent at WGBH, giving tours of their radio and television studio. I’m always proud to highlight the many ways that NCAM is improving access for all.

Welcome, Madeleine.

Madeleine Rothberg: Hello.

Helen Osborne: I know about making radio and TV more accessible, but I’m really intrigued with your focus on personal health records. Tell us more about the work that you’re doing.

Madeleine Rothberg: A personal health record is a piece of health IT.

Helen Osborne: Let’s just be health literate here. Explain acronyms. Health IT means?

Madeleine Rothberg: Health IT is information technology. That’s computers, websites, the internet, your cell phone or any piece of technology that you use. It can be used to promote health and to communicate health information.

Helen Osborne: As opposed to just using our cell phones for everything?

Madeleine Rothberg: Sure. It’s a subset of what you can do with the internet or with your phone. You can use your phone to check your email, but you can also use your phone to look up symptoms you might be having or to communicate with your doctor to schedule an appointment or check on your blood test results.

Helen Osborne: That’s health IT. So where are personal health records? Do they mean the same thing or is that something a little bit different?

Madeleine Rothberg: Personal health records are one kind of health technology, and they’re a kind where you have access to personalized information about yourself.

While you can search online for a variety of different educational resources written by doctors or from health agencies, your own personal health record is the information about you. It might be held in your doctor’s system or in the system of a hospital.

Helen Osborne: It’s not just that I’m looking up strep throat and seeing what strep throat is. I’m looking at what happened when I brought someone to the doctor who had strep throat and what their fever was or something like that, or if I had strep throat?

Madeleine Rothberg: Sure. It could be information about your own personal doctor visits. It could be information about prescriptions that your doctor has recommended for you.

Helen Osborne: How does this relate to electronic health records?

Madeleine Rothberg: The electronic health record is a term we usually use for the information that the medical system holds and uses. Your medical professionals might access your electronic health record and then, through a related system, you can access your own personal health information.

Helen Osborne: That makes a lot of sense to me. I see when I go to the provider, he or she is typing in stuff and then I can go online later and see a little window of that.

Madeleine Rothberg: Yes, and it varies by system how much of that record is shared with you in your personal health record.

Helen Osborne: That’s information I can go find. Are there other kinds of information too? Could I email my doctor that way? Is that part of the personal health record?

Madeleine Rothberg: Some systems allow you to send emails or messages to your doctors or to the other medical staff. Some allow your clinicians to prescribe educational information for you.

For example, when they prescribe a new medication or give you a new diagnosis, the medical team might link directly to educational material about that condition or about that prescription.

Helen Osborne: That’s almost a bridge with health literacy and the information we’re trying to write clearly. It’s accessing information that’s relevant to me more than anybody else.

Madeleine Rothberg: That’s right. It takes some of the searching and the guesswork out, because you don’t have to check how to spell it and go look it up yourself. Your doctor, nurse or another clinician can directly prescribe just what you need.

Helen Osborne: That sounds ideal. It doesn’t happen in my case. I don’t have that access to information. I haven’t seen it. Happily, there’s nothing much wrong with me, so maybe it’s there.

That sounds ideal. What’s the problem?

Madeleine Rothberg: What we found in our research is that a lot of the systems that are out there in common now don’t have all the useful features that people would like, but the focus of my work is on accessibility for people with disabilities.

Helen Osborne: Accessibility of this information to people with disabilities. Can we break that down? I’m all into trying to be clear. What do you mean by accessibility and who specifically are you talking about with people with disabilities?

Madeleine Rothberg: In this project, we focused on the needs of people with sensory disabilities, which means people who are blind and people who are deaf, as well as people with physical disabilities, so motor disabilities that might make it difficult to use a computer.

In all cases here, we’re talking about access to the computer, to the information in the personal health record. That means, largely speaking, access to a website, since most of these tools are delivered through the internet through websites.

We’re talking about how to create a web page that’s accessible to people with disabilities.

There’s a lot of information out about that in general, but for our project, we wanted to focus on how accessible websites could help with giving people with disabilities access to their own health information and help them to manage their health and maintain their independence through effective health education.

Helen Osborne: Listening to you, I’m appalled that it’s not already happening.

Madeleine Rothberg: It’s true. You would think it would be automatic for such an important kind of feature and that the developers would be ensuring it was all accessible.

Unfortunately, what we found when we looked at existing personal health record systems was that the accessibility was a bit spotty. There were places that the right features were in place and other areas where they weren’t.

We also found that, even if they were technically accessible, these systems were not very usable. Even for people without disabilities, they were confusing and crowded.

Helen Osborne: Can you give an example?

Madeleine Rothberg: There might be screens full of choices and the wording isn’t clear enough for you to understand which choice is the one you want. It might be that there are so many choices and it’s not well explained.

You might see lab test results without any explanation of what the number means. For a person who’s not a doctor, looking at that result, they might not know, “Is that good?” “Is that bad?” and “How can I learn more about it?” for example.

Helen Osborne: We all need that to put into context what information about ourselves means.

Madeleine Rothberg: That’s true. The usability issues that we found really would apply to everybody, but they’re made worse for people with disabilities because, for some disabilities, using the web can be harder to begin with. Any usability problem just compounds that.

Helen Osborne: I’m thinking right now of an older gentleman I once knew. I was trying to teach him how to use the computer and the mouse. He was so afraid of the mouse that he would keep his finger on it. I can’t even imagine him being able to aim it and make a choice in a very narrow space.

Madeleine Rothberg: People who are new to computers often have trouble adjusting. One way to make that easier is to make it possible to use a tool with the keyboard as well as the mouse, for example. Some people find it easier to use the keyboard and not use the mouse as much. That’s one way to make things more accessible.

Of course, there are some users who can’t use a mouse at all, whether because they have poor vision or poor fine motor control, so keyboard accessibility is a key piece of making any technology accessible.

Helen Osborne: You obviously know a whole lot about accessibility, IT and people with disabilities. Tell us about this project that you’re working on.

Madeleine Rothberg: What we did in this project was we wanted to create a model accessible personal health records system, and we wanted it to be, from the ground up, a user-centered project.

We started by going out and talking to a lot of users. These were people with disabilities who might or might not be actively involved in healthcare at the moment. Some of them had complicated health situations and used healthcare a lot, and some of them were relatively healthy and simply had a disability.

We asked them, “How can health IT help you in your goals in life?” The goal in life that was identified most often to us was independence. People want to be independent and in control. They want to be in school or at work and taking care of themselves.

Helen Osborne: A goal we all share.

Madeleine Rothberg: That’s right. We asked them, “How can health IT help you with that goal?” In short order, we had collected 22 different ideas about features that a health IT system could offer that would be really helpful.

Some of them are ones that are currently available in some systems, like scheduling an appointment or requesting a prescription refill. Those are relatively common features.

Then some of them were quite complex. They wanted insurance information and they wanted to be able to research what the cost of a generic prescription would be compared to a name brand.

They wanted to be able to coordinate their appointments so that, if travel is difficult for you and if it’s hard for you to get across town and you have a couple of appointments, you’d like to do those on the same day in the same place.

They wanted some really sophisticated scheduling ideas that would make their lives much easier because travel can be a problem.

Helen Osborne: It’s beyond just making a phone call and working this out to use the technology.

Madeleine, you talked about a model project. Is this something that’s really happening or is this something you’re learning more about? You also say “we.” Is WGBH the sole partner in this?

Madeleine Rothberg: Yes. I should definitely speak about my wonderful partners. WGBH was the lead participant in this grant, but we could not have done this work without some terrific partners. We worked with The Children’s Hospital of Philadelphia, where Dean Karavite is the expert on usability and health designs.

We also worked with the Inglis Foundation, which is a center in Philadelphia that provides both residential care and community outreach and care for people with physical disabilities.

Helen Osborne: It’s really a true partnership. WGBH brings in the accessibility part through the center and then you have the hospital and people with disabilities. That sounds great.

My other question was you referred to this as a model. Is this just a work in progress?

Madeleine Rothberg: It’s complete as it is of now, but it’s not a usable personal health record system. Nobody is going to log in and see their own doctor’s results in it. It’s a web-based model site.

What we did was, from the 22 ideas that our participants gave us, we picked five to model through online case studies, essentially. We present a demonstration of how those goals could be achieved within a system.

Then we tested it for usability. We went out early and often and worked with participants and showed them our designs and ideas as it evolved and improved. We made corrections based on our user feedback.

Helen Osborne: Wow. What a wonderful resource. Is this available?

Madeleine Rothberg: It is. All of the materials are on our website, which is http://HealthITAccess.WGBH.org.

Helen Osborne: We’ll have that URL on your Health Literacy Out Loud web page too.

Madeleine Rothberg: That would be great. What you’ll find there is both our research reports and the prototype itself. We documented all of our research with the users and shared all of our results. Also, we have the complete code of the prototype available for everyone to share.

Helen Osborne: Oh my goodness. I hope that people at that lofty technical level go to it, also our listeners.

I am just hungry to learn more. What can I do, as someone who cares about health communication, today? I’m delighted that programmers and big thinkers are all dealing with this. What can I do or recommend to others about making our information more accessible to all?

Madeleine Rothberg: Any time you’re putting information on the web, you should be thinking about the basic accessibility of that website. I’ll try to share some resources through the website page about some basic information on how to make your website accessible. There is a lot of information out there.

Many of the things that you’ll need to think about are quite simple. Some of them are more technically complex.

Helen Osborne: Give us an example of a simple one.

Madeleine Rothberg: One simple one is color contrast. People with some kinds of visual impairments have trouble reading information if the contrast is too low. We have some standards that have been set in the industry for what the proper contrast ratio is for text.

For example, of course, black on white is fine and black on light blue might be fine, but if you do something like a dark grey on a light blue, depending on the exact shades it might start to veer into poor contrast.

Helen Osborne: That’s neat. What about white on black?

Madeleine Rothberg: Any time you reverse the colors, you have the same contrast, so that will be just as good. Some people prefer that.

Another thing that you need to do in designing your site is, wherever possible, design it to be flexible. If a person has their own particular color scheme that they use because that’s best for them to access information, their setting should be able to override whatever you’ve chosen for your color scheme on your website.

Helen Osborne: Does that just happen in the coding behind the scenes?

Madeleine Rothberg: That’s right. That’s proper coding in order to make a flexible website that can accommodate other people’s needs.

Helen Osborne: That’s for vision.

Madeleine Rothberg: I’ll give you another really simple one. Don’t name all your links “Click Here.” One way that blind people navigate the web is by bringing up a list of all the links on the page and then skimming and looking for the links that they’re interested in. If all the links are called “Click Here,” they can’t tell them apart.

Helen Osborne: Do a longer phrase. I wonder about that, because I have a newsletter, I’ve got websites and all of that, and I don’t know how long to do the hyperlinks, but I can choose it.

Madeleine Rothberg: That’s right.

Helen Osborne: Should I say things like “Click here for more information about such and such”?

Madeleine Rothberg: You could, or you could reword your sentence to say, “The new newsletter is available,” and “New Newsletter” could be the link, for example.

Helen Osborne: Do just a few words, but the most important words.

Madeleine Rothberg: Yes, so people can tell the difference between the various ones on the page.

Helen Osborne: That is neat. In these podcasts, which are audio only, is just the spoken word right now, I have transcripts made. That’s the right thing to do, right?

Madeleine Rothberg: Absolutely. Audio and video on the web need to be made accessible to people with hearing and visual impairments.

When you have a video presentation where there’s sound and there are pictures that go together, then it’s important to use captions. Captions show the text timed to match the visuals. That’s so that a person who can’t hear is reading the captions and seeing the images that are related at the same time.

When you have an audio-only resource, like a podcast, and there’s no visual to go with it, then it’s perfectly acceptable to use a transcript, which is all of the text in one page, but not timed to the audio.

Helen Osborne: That’s neat. I know I get a lot of feedback from people who really want the transcripts. I don’t think it’s just for hearing problems. I think it’s just because they have a preference or they’re teaching and they want to use that in a different way.

Madeleine Rothberg: It’s absolutely a usability feature as well, as you’ve found. It also makes it more searchable for anyone who’s looking to have their material found online. An audio file can’t be searched for its words, whereas the transcript or captions can be.

Helen Osborne: I learned that along the way, too.

Madeleine, you are a wealth of information. Just gazing into your ball, where would you like things to be in a few years when it comes to accessibility? Not even where would you like it to be, because I bet I can guess that, but where do you think we will be when it comes to personal health records and accessibility in just a few years from now?

Madeleine Rothberg: There are some good trends in place. One is an increasing emphasis on usability.

There’s been quite a bit of complaint that medical information online is not designed for usability and that even the doctors sometimes have trouble using their own systems, never mind the consumers who are trying to understand information that’s not their own specialty.

I think I see a lot of emphasis on usability and I see health IT companies gearing up to put more emphasis on user testing.

User testing is always the most important tool for reaching better usability and better accessibility. Experts can say all they want, but it’s the users and whether or not they can make good use of a system that really tell you if you’ve reached your goal.

Helen Osborne: That goes to the heart of good health literacy principles, too. We can just go so far in doing our best to make things understandable by our audiences, but know who your audience is and then work with them to make sure it’s understandable, useful, appealing and gets to where we all want to go, which are the goals.

Madeleine Rothberg: Absolutely.

Helen Osborne: Madeleine, I thank you so much for all you are doing. It makes me even more proud that WGBH is a partner in doing this. I think we all have a part to play in making information accessible, so thank you, and thank you for being a guest on Health Literacy Out Loud.

Madeleine Rothberg: Thank you for inviting me.

Helen Osborne: As we just heard from Madeleine Rothberg, it’s important to make all our information accessible to all. 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 monthly e-newsletter, What’s New in Health Literacy Consulting.

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes, Stitcher Radio and the Health Literacy Out Loud website at www.HealthLiteracyOutLoud.org.

Did you like this podcast? Even more, did you learn something new? If so, tell your colleagues and tell your friends. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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"As an instructional designer in the Biotech industry, I find Health Literacy Out Loud podcasts extremely valuable! With such a conversational flow, I feel involved in the conversation of each episode. My favorites are about education, education technology, and instruction design as they connect to health literacy. The other episodes, however, do not disappoint. Each presents engaging and new material, diverse perspectives, and relatable stories to the life and work of health professionals.“

James Aird, M.Ed.
Instructional Designer