Health literacy and rare disease

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Med Ad News spoke with Mike Czuba and Sharlene Jenner of AbelsonTaylor about their agency’s approach to getting the right message to the right patient in the rare disease space.

By Joshua Slatko • [email protected]

Med Ad News: How do you see brands dealing with the challenges of health literacy
in rare diseases?

Mike Czuba, VP, insight innovations, AbelsonTaylor: One of the things that we are proud of at AT is our rare disease experience. What’s fascinating about rare disease versus, let’s say, more large scale or “main diseases,” is the extent to which communities of patients themselves drive the conversation as opposed to the manufacturer sometimes. Communities are formed around these rare diseases. An individual is diagnosed, they go out and research. They join Facebook groups. They find whatever they can to get on track with what they’re dealing and then come ready and armed to their HCP with this information. The fascinating part about that dynamic is that sometimes the HCP is caught a little bit flatfooted because it’s a rare disease. So the stream of conversation ends up being driven by the patients themselves rather than the manufacturer. People are tooling themselves up to get smart about this so they know the right questions to ask.

Sharlene Jenner, VP, engagement strategy, AbelsonTaylor: Yes. It’s really about a patient becoming an advocate for themselves when you start to think about all the ways that they can absorb information right now. In the past, you maybe had printed material or the pamphlets at your doctor’s office. Now, fast forward, 20 years into the age of the internet, information is at your fingertips, they’re able to go into communities on social media and understand from other patients facing the same challenges and get that support. Also get information from a health literacy perspective on, “These are the questions that you should be asking. These are the things that you should be aware of. These are triggers that you should be concerned about.” I think as we start to become more connected because of the way that the communities have been built from a technology perspective, that’s really giving rare disease patients a lot of power to become advocates for their own literacy themselves.

MedAdNews: Where does the brand come into the equation?

Jenner: Well, the brand plays a very interesting role. When you think about the work that we do to engage a patient, we look at it in two aspects. The first is understanding where the patient needs to have more information to be able to be, like we said before, an advocate for their own care. So, at that point, we might be thinking of things like early signs, symptoms, things you should be aware of, things that you should be looking for as you’re progressing through this disease. Then the second aspect are those healthcare providers. This may not be something that they deal with every day, since rare diseases are, well, rare. So, the brand has to help them understand what is the latest and greatest. 

Where we are really seeing something amazing right now is the way that AI and generative AI are really making more information from an explanatory position available to both patients and HCPs. Because when you have a tool like ChatGPT, you can ask it a question and it answers in context to you. You could say, “Tell me about sickle cell anemia. Tell me about hemophilia. Tell me about tardive dyskinesia.” As you’re asking about those things as a patient, it’s giving you answers in context, which really democratizes how information moves from a brand perspective. Because, normally, brand jargon might be a little bit – as you’re talking about an indication or medication, it might be a little heavy. Being able to explain it in a simple context is going to be the key to success over the next 10 years with how AI is affecting medicine.

Czuba: Building on that point, when you think about the way that brands try to prepare the market, whether it’s through disease education or through branded efforts, a lot of work goes into understanding where the market is in terms of its understanding of diseases. For instance, one of the things that’s wonderful – I remember going to creative meetings when it was just radio, print, and outdoor. Now, what I love about the way that we’re able to engage people today is we’re able to meet them where they’re at. We’re able to meet them in terms of their own literacy. For instance, brands do a lot of work in terms of segmenting customer bases and they can segment them in a whole range of different ways. Through that lens, you can actually start to understand through messaging, research, the customer journey, all manner[s] of different research techniques where people are in terms of how they understand their disease. That’s true of HCPs as well. We’ve found it to be true that sometimes HCPs are just ignorant because it’s just not an interesting disease and the brand needs to work very hard to get them to engage. Other times, you’re talking about an audience that’s inherently growth minded and so they’re always digging in.

Now, you’ve got to figure out how to catch up to them at times, but it’s all that customer insight work that gets done. That, amongst other things, allows a brand to understand where all its different segments are so that they can provide the pool of information and allow people to find their way to what is going to be most valuable to them. A ton of work goes into this. It’s literally like two years’ worth of stuff prior to launch is going on to get us in a position, and it’s constantly evolving as news comes out.

Jenner: As you start to look at, as Mike was saying, it takes two years for us to prep for it, because that’s what we do on a daily basis, working with the clients and brands that we do from a drug manufacturer perspective. When you start to think about understanding, “This is an indication for a treatment for a rare disease,” that’s one facet. The other facets that come up end up being, what are the environmental stressors around that? What are the things that either surround it from a social stigma perspective, or if there’s things where there’s not a lot of awareness. We have to be able to suss out what are some of those areas that then become challenges for us to be able to get the awareness and the literacy around this condition out.

As we start to look at different types of rare diseases or different types of things that we’re managing with our brands and clients, one of the first things we like to do is understand what the environment is, how do we look at the literacy of both the HCP and the patient community. Then understanding, at that point, how far along are they or how not far along are they. If they’re not far along from an engagement perspective, we try to figure out the places that we need to hit first. Then, ultimately, we always want to start with an awareness of how a patient can understand what’s going on, what’s coming up, and how they can be prepared to talk to their HCP. Because being an advocate for yourself is key in understanding how you can get the best treatment for yourself.

MedAdNews: Can you talk a bit more about the process of segmenting the audience and segmenting patients by their level of health literacy: how you are able to make those calculations? And then, once you’ve made them, how you are able to come up with messaging and content for each of the segments?

Czuba: Segmentation is an interesting exercise. It’s basically a factor analysis kind of approach. It’s a statistical model, but the truth is that you can segment based on your strategic needs as well. For instance, one of the most basic ways you could segment a patient population is in relation to when they’ve been diagnosed or the extent to which they are currently on treatment. A newly diagnosed patient is here. A veteran patient, let’s call it a long chronic disease like diabetes, they’re going to be way down at the other end. You could look at it that way, but in the end, what you’re looking for is just to understand, in a patient population, what are all the different typologies of patients? It’s a little bit difficult to describe because it’s very situational, but it’s done through a very rigorous research approach, which is essentially like a hypothesis. How should the market break out in such a way that we can really engage it smartly?

So, you design survey instruments and you do all your surveying, and then it just becomes a backroom statistical modeling exercise, where you start to figure out, okay, what are the factors that are clustering together that then lead to a segment being formed? Now, what you’re looking for are very distinct groups. Overlap is a killer in segmentation. You have to do it very, very smartly, and then within that pool of questioning, you’re naturally asking people about, for instance, the degree to which they understand different topics related to their disease, different treatments. What are they aware of? All of that stuff will then factor into the way you’re able to profile these patient groups. So then you could start to say, okay, this group is very naive when it comes to understanding their particular disease. Therefore, we need to start at the very beginning.

On the other hand, this other group seems very much attuned to the state of their disease and the nature of it, and now their conversations will revolve largely around solutions or complaining about how what they’re doing right now isn’t very good. Either way, you’re creating a profile. Essentially, it’s like you’re thinking about a persona in a way and saying, “This is the person I’m talking to and this is what they’re going to need.” From there, what we do is concoct a whole series of messaging schematics that we then run through the mill, through clients, through testing, whatever it is. It starts with the person and their problem and their state of mind and state of being, and then everything kind of follows from that.

Jenner: As we start to look at segmentation, it always leads into personalization in that way. Ultimately, we are trying to define – just like Mike was saying, if we understand the environmental stressors, the challenges around a disease state that we’re trying to increase awareness around both to the patient and the HCP side. Looking at the segmentation, it’s all about that patient journey, being able to understand if we’re looking at this disease state, there’s always the same end goal but we have to figure out what are the three or four paths to get a patient to that end goal, because not everybody is the same. When we look at segmentation and we start to group everyone to saying, “Oh, these might be the ones who are a little bit more naive in their disease state literacy versus those who are heavy advocates or might be involved in community awareness around it,” what are the different paths that we want them to take being able to make sure that we’re giving them information at the right time and the content that makes sense for their level of understanding of their state in their disease journey?

So, being able to really look at it from a patient experience perspective and being able to leverage what are very key personalization journeys through that awareness level, whether it’s meeting them in the right channel from a media perspective, like if it is a disease state where, historically, that segmentation of the population might be more in the broadcast media, then that’s where we would probably push them on that perspective. If it might be a disease state that affects individuals who are very active in social media, then, at that point, we may take a strategic perspective to say, “Hey, this is something we may want to build a community that they can join and then have some peer-to-peer learning.” The segmentation is important for us to understand what channel makes sense and then also understand what’s the journey that they will need to go on at their level, and then being able to increase the literacy to a point that they all hit the end goal around the same time. Being able to be full advocates for their medication, their medical plan, and being able to be fully supported for what they’re going through.

Josh Slatko, Med Ad News Josh Slatko is contributing editor of Med Ad News and PharmaLive.com.