Helen: 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 truly remarkable people, hearing what health literacy is, why it matters and ways all of us can help improve health understanding.
Today I’m talking with Neyal Ammary-Risch, who is the director of the National Eye Health Education Program and the health literacy coordinator at the National Eye Institute of the National Institutes of Health.
Neyal’s work includes overseeing programs that raise awareness about early detection and treatment of eye disease, along with the promotion of vision rehabilitation.
She has written about how to communicate health information effectively and is author of the book In Mommy’s Garden, a book to help explain cancer to young children. Welcome, Neyal.
Neyal: Hi, Helen. Thanks for having me here this afternoon.
Helen: We met in person many years ago, and I have a copy of your wonderful, touching, important children’s book In Mommy’s Garden. Now you’re working to raise awareness about eye disease. You’re on a big scale now. How would you go about raising awareness about a concept so big?
Neyal: That’s a very good question. When you think about health campaigns and what they’re used for, there are a lot of ways to define campaigns. They can be in large scale or small scale.
We don’t try to promote eye health in general. We really look at specific conditions and audiences who are at risk for those conditions and then do campaigns around that.
Helen: You made it finite. It’s not everything to do with vision.
Neyal: That’s right because it would just be impossible to cover everything. In a campaign, you want to make your messages are meaningful and actionable. You want to make sure that you’re tailoring the message to your audience and not overwhelming them with everything about eye health.
You’re giving them information that’s specifically relevant to them and giving them action steps that they can take to address that issue.
Helen: Can you give an example?
Neyal: Sure. One example would be glaucoma. We know that African Americans are especially at high risk for glaucoma and at a younger age than the rest of the population, so we do a lot of outreach toward the African American population.
We try to reach them in their communities where they are—in their churches, barbershops, beauty shops and other places where they get information to their community.
We’ll talk to them about glaucoma and how it runs in families, and to make sure that they’re talking to family members and friends about it and getting information in places where they are in their community.
Helen: How does a campaign differ from regular old health education?
Neyal: Health education is part of a campaign. A campaign can be year-round or just be a certain time of the month. A campaign really uses a surround sound approach, as we like to say. Your audience will encounter messages in a different format and through different channels.
They can hear it year-round, or you can do it during Glaucoma Awareness Month in January. We typically do a lot of outreach during that month. We try to make sure that we get the messages out whether it’s through social media, traditional media or church ministries.
As I mentioned, the barbershops are educating their customers about glaucoma. We work with them to train them. We’re making sure we build community capacity year-round.
Helen: I’m getting that sense. I like the way you described it with surround sound. Is it that the individuals you’re trying to reach are really immersed in this topic in a variety of ways?
Neyal: It just depends. Everybody has a little different level of experience or awareness about it. What we try to do is really focus on the people who may not know that eye health is an issue.
A lot of times people will wait until they have a problem with their vision to even pay attention to it. We let people know, “You might not be experiencing a problem now, but if glaucoma runs in your family or if you’re African American, you may be at higher risk than other populations. There are things you can do now before problems start to prevent vision loss.”
Helen: Neyal, you’re at a very big scale right now. What would your organization do differently than someone working at an ophthalmologist’s office in a small town somewhere?
Neyal: A big difference is that a lot of times in the ophthalmology or optometry offices, they’re seeing people who are already diagnosed. I mentioned that we’re trying to get the prevention message out for the person walking down the street who may not even realize that they have an eye condition or disease.
We want to get to them first, so we’re basically working with existing programs such as diabetes programs. People who have diabetes are at highest risk for vision loss from things like diabetes. We’ll work with them and say, “As you’re managing your diabetes, don’t forget to have your eyes examined also.” We try to build an eye health message into other existing health areas where eye health is a risk.
Helen: It’s very much educationally based, but meeting people where they’re at or just a step before. You don’t want to wait until the diagnosis. Just get them at a good learning time for a relevant audience.
What’s involved in a campaign? Probably a lot of our listeners are doing a lot to raise education about all sorts of issues. What did you learn from doing this?
Neyal: That’s a great question. There’s not a one-size-fits-all answer. It depends on the community or the audience that you’re trying to reach. There are so many different things. We know social media is very popular now and that’s one way.
Helen: What do you mean by social media? That’s a big, encompassing term.
Neyal: It’s Facebook, Twitter or even YouTube. We know that a lot of audiences are out there getting information from the internet and finding information out there.
If a small organization has people in their community that are following them online or on their Facebook profile page, then they can put out information or Facebook posts about different prevention eye health messages.
Helen: Does that reach people just of a certain age category or who are savvy about technology?
Neyal: I think it does limit scope to some people. We know that research is showing that older folks are starting to use social media a little bit more. Again, that goes back to why the surround approach is so important. It’s about reaching people through multiple avenues.
There are some people who are not on social media and not on the internet, but they sure do listen to radio or pick up that local community newspaper.
Helen: You do that too?
Neyal: Yes. We do everything. We have an article if we can or we have a public service announcement that we’ll put in. We even work with grocery chains sometimes and ask them to print just a simple message about eye health on the bottom of their store receipt.
We may even ask the pharmacy to make an announcement over the loudspeaker saying, “If you have diabetes, when was the last time you had an eye exam?” There are different ways to make sure that people are hearing the message. It’s definitely not going to be in a one-size-fits-all. You also have to hear things multiple times for something to be remembered.
Helen: You talked about the barbershop and the beauty parlors. That’s different.
Neyal: That’s something that we’ve been doing to reach a lot of our audience, especially African Americans and Hispanics.
Community health workers or lay health workers are really great conduits of information for folks because people are already there. They’re already a captive audience talking and their barber or beautician can say, “So and so has glaucoma. What do you know about it?”
They’ll start a dialog, and it’s a very natural dialog, but the beautician or the barber is already well versed and can slip those preventive medicines in or encourage them to go get an eye exam. We make sure that we educate the trusted community sources.
Helen: I was wondering how a barber would know a lot about glaucoma. You’re educating trusted community sources?
Helen: Because you’re at this national level, what are you offering people to make a consistent message in this surround sound approach?
Neyal: One of the things we do is that we develop tool kits which are very easy things for people in the community to just come to our website and download or order. These tool kits include everything somebody would need.
Sometimes they want to do a PowerPoint presentation, or they just need a simple brochure to hand out. They may want scripted PSAs that they can do over a loud speaker at a grocery store.
We put all of those things on our website and we invite communities to come. Then they can take what we have and adapt it to meet the needs in their community. We really try at the national level to help build community capacity and have people take what they can from us and then adapt it to meet their own needs.
We try really hard to make sure that we offer a variety of educational tools and resources, and then also training people to use those resources. We have a train the trainer program.
Helen: Tell me about that.
Neyal: For our diabetes program, we work with a lot of lay health educators and community health workers. We actually go around the country and do trainings with them to help them learn how to use our diabetes and healthy eyes tool kit to address that issue with people with diabetes. It helps them put on workshops of their own in their own community. They can take our resources, learn how to use them and learn how diabetes affects the eyes.
Then they’ll take the information and go into their churches, community senior centers, or anywhere where folks are around and do their own educational sessions. They can use our materials to support those efforts.
Helen: I’m envisioning this. There’s like a little dot there and it just radiates out in all these different ways. There’s no way that you or your staff could go all around the country educating everybody who needs to know this.
Neyal: That’s right, but we do work with a lot of organizations. The key to any successful campaign is working with national, state or local partners. It’s about finding people who are trusted sources of information in their communities and then working with those.
We do work really hard to build partnerships with organizations around the country to help them educate others.
Helen: What do you do about quality control and consistency of the message?
Neyal: We hope people understand that as a federal government agency, especially from the NIH, that everything we do is evidence based and tested. We have our scientists look at it. We test everything with our audiences and pilot test things before we finalize them.
We hope that people are not changing the messages and understand that they already vetted through the scientific community and that they are appropriate messaging for the community. How they deliver the information is what could be adapted, but we hope they’re using the information that we’re already putting out there.
Helen: But it’s a hope.
Neyal: Yes, it’s a hope.
Helen: Tell us a story about how this worked in practice.
Neyal: I mentioned these tool kits. One of the things that we do a lot is helping to raise awareness about eye health among older adults. One of the things that we’ve done is develop this tool kit called See Well for a Lifetime. It’s an educational series on vision and aging.
It’s a three-part series to help people who are working in senior centers, YMCAs, and even the Salvation Army to help people deliver eye health information to seniors in the local community.
It’s been really rewarding in that you don’t normally think that people in senior centers who are perhaps just doing activities and fun things with the seniors are talking to them about eye health.
We have examples where they’re looking for informational sessions, or sometimes they’ll partner with a local eye-care provider and invite that person in to talk about eye health. Then they’ll use our material to supplement what they’re already doing.
There are a lot of different ways things have been used, even at the YMCAs. You wouldn’t necessarily think that a YMCA would be doing health education sessions, but we know that people have come to our website and downloaded our resources and are doing educational sessions.
They don’t necessarily have to be a health professional. That’s the beauty of what we do. Community capacity building is so important. We try to put it in language that anyone can understand and put out basic information that is important for people to know about.
What is included in an eye exam and what should somebody know? What are the questions you should ask your eye care professional? Anyone can deliver that information, and we’ve put that information in an easy way for them to use it.
Helen: That’s wonderful. We’re talking about the bigger issue of what’s involved in a campaign, but for your specific campaign is there a certain place to go?
Neyal: Sure. I’ll send you to the National Eye Health Education Program website where listeners can find all of our resources, materials, and even tips for working with the media in their local community and how to use social media. We have a lot of that information on there that they can adapt for their own local programs. That’s www.NEI.NIH.gov/nehep.
Helen: Thanks for that. I was interested in talking with you about this greater concept of awareness campaigns, in addition to the specifics about eye health. You covered a lot about both.
I’m putting on my Health Literacy Month hat right now. I created this campaign in 1999 to raise awareness about health literacy and the importance of understandable health information.
Is there any advice you’d give me about how to do that? It’s been going on many years. It’s not robust like yours because I don’t have the resources, but is there a tip or lesson learned about creating awareness about health literacy?
Neyal: Sure. Work with partners. Think about other experts in health literacy or stakeholders who can really get your information out. Ask for people to partner with you. We always say if you don’t ask, then people can’t say yes. It’s really important to ask for those partners and to identify people who may be interested in working with you.
Second, if there is anything you want to do to promote health literacy awareness among local media, if there are statistics or any numbers that you can share, we know that media like numbers. If there’s anything from the NALS survey or anything else that’s new as far as statistics or data, you can share that with local media.
Maybe you could try to find a local person or encourage other organizations to do it in their own communities and try to get the media involved. Creating your messages about health literacy in ways that can be packaged and distributed to the public, to the professionals or whoever it is you’re trying to reach, is important.
Think about if you want to use social media or grocery stores. What is your message? I guess I should have asked, who is your audience for Health Literacy Month? Are you trying to raise awareness among health professionals for what they should do or is your audience the public?
Think very critically about who your audience is, and then tailor messages and resources in a way that’s going to be effective and meaningful for them.
Helen: Wow! I was just taking notes as you were saying that. I don’t usually do that during podcasts. You said to work with partners and local media, package your messages, know your audience and tailor your messages. Thank you so much.
That helps me a lot for Health Literacy Month. I hope that it helps listeners too for raising awareness perhaps about health literacy, eye health or whatever else they are doing. That seems to be the core of what so many of us do. We are trying to raise awareness in ways that people can understand and act on.
Neyal, those tips for Health Literacy Month are so great. I’m soaking it up. Is there anything else we should know?
Neyal: I’m glad you found them very helpful, Helen. What’s important to know is that campaigns can happen either a certain time of the year or year-round, but you don’t have to do everything all at once. The beauty of health information is that it’s necessary all the time and you can always build on what you’re doing.
For Health Literacy Month and what you’re doing, if you’re focusing on the health professionals this year, then you might not be able to do a whole lot for the public. Focusing on what you can do for health professionals is great.
Every year you can build on that momentum and build on the partnerships that you’ve maintained over the years. Then next year you can maybe do something that focuses on the public. You should do whatever fits what you’re doing, but just realize that you can expand and build. You don’t have to do everything all at once.
Helen: I love that. It fits in with my philosophy, budget and time. We don’t have to do everything all at once, but be clear where we’re going in that scalable surround sound.
Thank you so much, Neyal, for sharing all of these tips, strategies and lessons learned with listeners of Health Literacy Out Loud.
Neyal: I’m happy to help.
Helen: I learned so much from Neyal Ammary-Risch about campaigns and how to communicate messages on a big level and scale it down in a very practical way. That’s what health literacy is about too, but it’s 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, sign up for the free monthly enewsletter, What’s New in Health Literacy Consulting.
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Did you like this podcast? Even better, did you learn something new? I sure hope so. If you did, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.