Ask the Expert! with Nora Herting
Sam Horvath: Welcome back to Ask the Expert! with Nora Herting. I’m Sam Horvath. For the next 30 to 45 minutes, we’re going to focus on topics around visual leadership, graphic recording, visual strategy, and how all these things can lead to greater success, better outcomes in business conferences, events, meetings, projects, and seeing them through to completion.
Sam Horvath: So, we’re excited to talk. You can find our back catalogue, which has guests like Dan Seewald, Mike Rhode, Donna Lichow and Mo Taylor over at imagethink.net.
Sam Horvath: Nora, welcome. It’s good to see you.
Nora Herting: Hi!
Making Rare Disease Visible
Sam Horvath: Hi. We’ve got 2 great topics today that I think have certainly been focuses this year at ImageThink. Up first, we’re going to talk about making rare disease visible.
Sam Horvath: We do a lot of work in the life sciences and healthcare space, and extensive work with rare communities afflicted with rare disease. The rare disease space.
Sam Horvath: So, I want to talk to you about how visuals, visualization and graphic recording plugs into that because I don’t think it’s the first thing most people think of.
How Does Visualization Fit into the Rare Disease Space?
Sam Horvath: With that, I think we’ll dive right into this rare disease topic. I think most people associate graphic recording with conferences and trade shows. Maybe client pitches or even internal strategic planning meetings, right?
Innovation sessions, that kind of thing. How does it fit into the rare disease space though?
Nora Herting: Oh, great question. If you know anyone, or you yourself have a rare disease, usually we want to be original and find things that are rare, right?
Why Having a Rare Disease is Challenging
Nora Herting: But in terms of diseases, you don’t really want to have a rare disease because there just isn’t the market and the momentum and the number of people behind it to sometimes have great education about it – even on the physician level. Like, not only to mention the patient or caregiver level.
Nora Herting: But, you know, even beyond that is pharmaceutical companies – they have to function as businesses, so they often are driven by where is the biggest need, AKA, where is the biggest market. If you’re suffering, or there is a disease that afflicts a couple 100,000 people or 10,000 people or thousand people, that is not going to be something that institution is going to be able to really justify doing the research, going through the FDA approvals, the clinical trials, all of that. So rare diseases, and having a rare disease can be really, really difficult challenge in terms of finding treatment, finding community or finding other caregivers or other people who are in a similar situation and having a support group.
Sam Horvath: Yeah, it sounds like it could be really isolating, I imagine and as you say, if you’re unfortunate enough to not be part of a big enough group to be getting the full investment from these organizations, it can feel like you’re not being seen and heard.
What’s the Impact Visualization Has in the Rare Disease Space?
Sam Horvath: Talk about some of the impact when we are brought in, when we do get in the room. I’m curious about – as we visualize these stories, as we visualize these experiences at ImageThink for these small maybe isolated feeling invisible communities what’s the impact?
Sam Horvath: I kind of want to know when you’ve been onsite, for you as the artist or graphic recorder, what’s the impact for our client and healthcare or pharma company that’s maybe bringing us in or the marketing agency that’s bringing us in, and then especially for the patient, the caregiver, the physician, these kind of caregiving communities.
A Story About a Rare Neurological Condition
Nora Herting: Yeah. One story comes to mind immediately, where I was the visual strategist, the graphic recorder onsite for a neurological condition that is similar to narcolepsy, but like an incredibly severe form of narcolepsy.
Nora Herting: It’s so debilitating that the conversation wasn’t with people who suffered from this condition, but it was with their caregivers. A lot of those were grown children – and it was their parents that came in to have a conversation with our clients, about what this is like. What has been the path for them when the onset of symptoms started and how have they dealt with it?
Nora Herting: Think about a situation where you’re sleeping 22 hours a day and you can’t stay awake. I went in and we had had our planning session, and we’d been briefed with the client about the session, but I had no idea that this was something that could happen to you.
Caregiver Sentiment
Nora Herting: And the father of a teenager came up to me and said, “I want to hug you right now. I just feel so moved, because we have been dealing with this for so long and there’s so little information about it out there. To see what I said about what my family’s going through drawn up on your board was so moving. And I just want to give you a hug.”
Nora Herting: And this man, who’s taking care of his child who can’t go to school, is not really experiencing life because she has severe onset sleepiness was really, really moving. So that, I guess tells you a little bit about the impact on me and also on the patients or the caregivers that are experiencing having their experience; watching their experience take shape and be validated through the power of visuals.
Validating the Feeling of Experiencing a Rare Disease
Sam Horvath: Yeah, I think that’s a keyword, right? Validation, and sort of like an affirmation of that isolation we talked about a little earlier that you mentioned and feeling invisible. You know, it makes me think of being gaslit right that it’s like – you’re experiencing this thing. You know what you’re feeling.
Sam Horvath: You know what you’re going through, but because it is so unique, because it is so rare and you’re part of this small community, it’s easy to doubt yourself, right? Or to feel like you know you’re not experiencing the world the way other people are and that that, that can be so hard.
How Does Visualization Help Those with Oncological or Neurological Disorders?
Sam Horvath: You know, on this note, I had a question. I know we’ve done a lot in the, you know, oncological and neurological spaces and specifically in the pediatric populations. Now, if you know this is repeating what you said earlier, we can move on.
Sam Horvath: But I was curious – what is it about visualization that helps this community? The pediatric population and with oncological or neurological diseases or disorders. What is it about visualization that helps them in particular?
An Example: Client Work Surrounding Dravet Syndrome
Nora Herting: Oh, that’s interesting. I’m thinking about work we did around a condition called Dravet Syndrome – DS for short – which is a genetic form of epilepsy. It starts – the child or the infant develops first normally, and the parents have a normal infant, and then suddenly things start going awry and they start developing seizures and severe developmental issues. It’s basically through gene mutation.
Nora Herting: But I think why it might be especially impactful – and I can only hypothesize because I am not a parent that has a child with a rare neurological disease – is that you and I are both parents; caring for an infant is hard enough and you’re overwhelmed enough. But then, imagine having a sick infant that has a rare disease that you may not have a doctor that’s knowledgeable about it, and I think that the visuals, in this case we created a map of that experience and also resources.
Nora Herting: How parents were navigating this could just be more accessible for them, than getting on the Internet and trying to read WebMD and moving through kind of this information. Because again, remember these are all rare conditions, so there’s not going to be as readily as the support for if your child had diabetes or some other more common disease.
Making Information Accessible and Human for Those with a Rare Disease
Nora Herting: So, I think the power of the pictures is making that information accessible. I think that in the work we’ve done around neurological – rare neurological conditions for children and Pediatrics is also that we’re able to bring a humanizing element to the work. We’ve worked with our clients to talk about, in this case with this illustration with Dravet Syndrome, it was – this is really heavy stuff that families are going through this – dealing with a lot of fear and grief around it. So how do we lend the visuals to a way that reflects the gravity of that situation at the same time?
Nora Herting: We opted to kind of do these silhouettes and choose this sort of different color palette that you might that if you were doing some something else for a different pediatric treatment or condition. So that’s my thought, is that the visualization in pediatric work around neurological diseases or oncology has extra value because the caregivers are going through so much, and it makes it accessible, and it humanizes it in a way that they really need.
A Way to Understand What’s Going On
Sam Horvath: Yeah, I think – I mean, you mentioned we’re we are both parents and I think of how much I rely on beyond just my daughter’s pediatrician, but you know, parents, friends, my own parents and their experiences and insights, and also just my own lived experience.
Sam Horvath: I know what a cold looks like and feels like. I know what the flu looks like and feels like, and it’s still so hard to know what’s going on, especially with very young kids when they don’t have the language to know what’s going on or how to articulate what they’re experiencing. So, I think to your point that the visuals really humanize and can shine a light for people – if you haven’t experienced this rare disease, but your child has it, suddenly now there’s a way to understand what they’re experiencing in a way, maybe you couldn’t before. I think that’s really powerful.
How ImageThink Supports Drug or Therapy Development
Sam Horvath: Sort of carrying it forward to beyond the research and patient experience side of things. It takes a lot to get a new treatment or therapy or drug to market, and out into the hands or the spheres of the patients who need it.
Sam Horvath: Where in that whole process does ImageThink’s work sit? Where do we support in the journey of a drug or therapy development?
The Pipeline
Nora Herting: Along the whole pipeline we’ve supported clients. We’ve supported clients, patient communities, caregivers in both rare and not rare diseases. Thinking about rare diseases, there’s an Orphan Drug Week which is around drugs that have been abandoned, maybe because there wasn’t enough market value.
Nora Herting: And visualizing just basically the idea around orphan disease and awareness. We’ve been pulled in to help raise awareness for diseases and potential new treatment areas, which would be considered R&D and preclinical trials to start to create conversations and build communities for tapping of potential patients to go through clinical trials for development of drug treatment for diseases rare and not rare. And then, kind of moving along into that. That’s the pipeline.
Nora Herting: Once it’s approved, we’ve been brought in before approval and post approval to help pharmaceutical companies really think about how they’re going to launch that, which requires a lot of education. It requires education to healthcare providers right around: what is the treatment? How is this used? How would I dose this? It’s education for obviously the sales team about what the drug does and who it’s appropriate for who it is in and education for potential patient communities that this is an option for them.
Patient Education Materials and TK2D
Nora Herting: And then, on the other side of that, once it’s out into the world, then there’s also patient advocacy. So, visualizing patient experience, patient materials, patient education materials.
Nora Herting: I was just thinking about this project we did for TK2D, which is also a genetic – a rare genetic disease, that can start really early in childhood or later and it’s debilitating.
Nora Herting: And so, we created illustrations of basically caregiver tips for what they have found to be effective for taking care of family members with TK2D. That was all under patient advocacy – those education materials and creating those much-needed touch points for people, especially illustrating literally that there’s a community of people out there, that are going through some of the same challenges you are and are able to help each other.
What Do You Wish People in the Life Sciences Knew About Visualization?
Sam Horvath: Yeah, the community building aspect. I was particularly thinking of visibility and being seen when we join these, with like the Dravet Syndrome. I think it helps people to see that they’re not alone.
Sam Horvath: So having run through basically all the places that visualization and graphic recording could sit and support this industry, what do you wish people working in the life sciences space – be it pharma, healthcare, research, biotech, private industry, not-for-profit, government – what do you wish people working in the life sciences knew about visuals and visualization?
The Power of ImageThink’s Work Through Nora’s Experience
Nora Herting: I think that we have different clients that have seen the effectiveness of what we do in one part of this process. And we just talked about really the power of visuals to touch sort of the whole patient experience and the whole life cycle of treatment, and how it kind of moves and can move those things along.
Nora Herting: I’m personally though really excited about what you mentioned, which is visualizing and helping connect communities around patient advocacy. Having had suffered from Lyme disease – which is not at all unfortunately rare at this point, but at the time I was diagnosed it was under reported and there was no treatment; there’s still no treatment – feeling like it was hard to find information or feeling very alone around experiences and connecting, and finally connecting with other people really did so much to help my journey through it and so by creating that visibility and illustrating those different voices is you know really incredible.
Nora Herting: It’s incredible work that we get to do, in both in service of the patient and the caregivers and the companies that are developing treatments for them.
Visibility is Key
Sam Horvath: Yeah, living in the Northeast – I mean, Lyme disease, I think is still really underdiagnosed, right?
And sometimes, getting a quick diagnosis is so key, right? I think it’s still really under diagnosed, but there is a greater awareness I think now than there was at least when I was younger growing up here, and people I think know better what to look for. But a big part of that is the way the information is spread. Lyme disease does have some visual signifiers. If it’s from a tick bite or something, you can see things. So it just again, even the way that that specific example can present – there’s a visual component that’s helping people identify it earlier and know what to look for. And so, I think for these diseases that are more rare, right? That kind of speaks to the idea that that visualization and visibility is key.
Nora Herting: Yeah, visibility is key. That is true, Sam.
Nora Herting: And back to how what we do helps is by making it visible by either visualizing the need by groups that don’t have specific treatment options or by visualizing the treatment options that exist for populations that do and connecting them or connecting them to each other so that they can give each other support – that’s a really powerful tool that that we have out in the world to help people.
