Julia Weiss, Ogilvy Health

Small town, big impact: Smart storytelling in rare disease

By Julia Weiss

I never know what to do when I’m in New York. There are so many options: restaurants, parks, museums, stores, a thousand places on every street. I find myself wishing I could live a thousand lifetimes, if only to try them all.

“Concrete jungle where dreams are made of / There’s nothing you can’t do.” – Alicia Keys

That’s what it’s like for marketers working on common conditions, such as diabetes or heart disease. You walk a crowded tangle of streets, conversations on every side, searching for your niche and your people. Who knows which hot new restaurant they chose? One thing’s for sure: the people in the cool Bushwick vegan restaurant probably won’t like what’s on the menu at the midtown steakhouse. Good thing they have so many options.

My dad is from a town that isn’t like that at all. There’s one main street, called Main Street. You can get your haircut by Frank the barber in the morning and find him drinking a beer in the one bar at night, where there are only a few options on tap. He’ll be telling the same old stories – ones that everyone, listening from their tables, have heard a hundred times before.

“The nice thing about living in a small town is that when you don’t know what you’re doing, someone else does.” – Immanuel Kant

That’s what it’s like to work in rare disease. “Rare” diseases affect fewer than 200,000 people total; “ultra-rare” diseases can affect as few as 30. Once you find your audience, that’s it – you get one shot to tell your story, and they’ll remember whatever you say. 

Wait…we’re in the age of agile, adaptive marketing – right? Why are we playing this single-story, zero-sum game? We can always pivot and optimize. 

That’s not necessarily the case in rare disease. More than 90 percent of rare diseases have no FDA-approved treatment, and it can take seven to eight years just to get diagnosed. It’s a zero-sum game for marketers because we’re walking onto an empty field full of people desperate for someone to join their team. 

We have the opportunity to make a substantial impact in the small towns of rare disease.

Here are five strategies for effective storytelling. 

1. Respect the quantitative data – and don’t over-index on qualitative

There’s a lot of pressure to get the story right, but interviews and other qualitative research tactics don’t always steer marketers in the right direction. Especially in rare disease, where populations and n values are small, qualitative outputs that may not be truly representative. At the end of the day, it’s not about marketers asking the right questions. It’s about us trusting what people decide to say without being asked. 

You can do this dependably with search, the quantitative tactic most likely to have helpful data. Tapping into what people are searching for is the closest we have to reading minds; the information we’re able to pull from that forum signals what patients and caregivers really want to know, unprompted, with no filter or spin for optics. Even in rare disease, we have always found search data that tells us something about how to move forward. 

Another respectful runner-up for quant data is social conversation analysis. Lean into any channel with the community talking, like Reddit, and you can get an understanding of not just what they’re talking about – but how they feel about it. Reddit is especially valuable because its users can post anonymously, meaning it’s more likely we’ll see their honest, unabridged thoughts. Plus, subreddits sometimes attract a good amount of attention in rare disease. 

For morality reasons, we obviously do not join private Facebook communities. These are safe spaces for people with rare diseases to honestly discuss their experiences, and it’s not appropriate for us to enter them under false pretenses. 

2. Invest in solid, foundational content strategy

I’m working on a rare disease launch brand right now. Our to-do list gets longer every day; we have websites, banners, social, emails, texts, and print pieces to make…naturally, everything is moving at the same time. 

Strategic imperatives (SIs) are helpful guidance at a very high level, but not down at the content level. These imperatives aren’t always audience-specific, which your tactics have to be to have any success. And because SIs are established early on and sometimes encompass both disease-state awareness and branded efforts, they’re not specific enough to drive content strategy and creation.

For performance-focused programs, which should be all programs, our team has found foundational content strategy to be the most helpful weapon in our arsenal – particularly so for rare diseases, which can be scientifically complex. Before diving into anything tactical, we always take the time to align on detailed, audience-specific content strategy: goals, an elevator pitch, three to five content pillars, and supporting messages for each pillar that we know, based on quantitative research, will pull our audiences through the funnel. While we keep channels in mind – mostly for regulatory and character count reasons – this strategy becomes the foundational guide for all tactics and creative. 

Back to our to-do list. Now, instead of spinning for days on a bunch of new topics that aren’t quite right and may not clear medical/legal/regulatory review (MLR), we can quickly pull an approved, on-strategy, proven-to-work content topic from the foundation. The up-front investment pays off for agencies or brand teams checking items off their list, but more importantly, for consumers and healthcare providers (HCPs), who will see consistent, journey-aligned messaging across channels.

3. Lead with empathy and respect disinterest

Let’s drive back to the small town for a moment. Launching in rare disease is like opening a new restaurant in that small town. Best-case scenario: it quickly becomes everyone’s favorite place; maybe you even open a second location. Highly plausible scenario: you’re the newcomer in an established community, and despite the flashy signs you put up on Main Street, people may just not be interested in trying something new. 

Long paths to diagnosis and limited understanding can make people with rare diseases wary of further frustration, and thus hesitant to jump at a new call to action. On the HCP side, it’s a question of applicability. Why eat at a restaurant that serves food you may not like; why engage with a company offering information on a disease you’ll probably never see in your practice? 

It’s imperative that we respect these sentiments. We want our audiences to make recurring reservations at our restaurant, not opt out. Every literal or figurative “unsubscribe” has implications not just for disease state education (DSE) platforms or individual brands, but at the corporate level, too. 

Empathy is key. Ultimately, it’s not about the story we want to tell – it’s about what our audience wants and needs to hear, and when/where/how they want to hear it. 

Best practices for empathetic experience design in rare disease: 

  • Allow subscribers to adjust their preferences. You might still get the opt-out, but providing the option to limit or focus communications can sweeten the deal
  • Build communities that meet audience needs. Sometimes it’s a social page with comments enabled; for diseases with stigma, a closed social group may be a better fit
  • Invest in resonant content formats and placements. To give just one example: video has been the thing in digital for some time now, but it doesn’t necessarily perform all that well on sites. People spend an average of just 54 seconds on most websites – hardly enough time to watch a video. But video assets are engaging on social and useful for sales reps trying to tell an impactful story

 4. Don’t be afraid to take on a bigger role

There’s a glut of resources, options, and treatments for patients with common conditions, but not so much for rare disease. Forget finding a treatment – it can be impossible for patients just to get the right diagnosis or find a doctor familiar with their disease. 

Rare disease marketers need to look beyond the typical activations to effectively serve these communities. More so than telling a story, our imperative is to guide patients and HCPs along their respective journeys with tangible, accessible, and helpful solutions. 

Consider building out one (or more) of the following tactics:

  • Doctor Finder: Helpful for patients who need to see a specialist for diagnosis or treatment (plus, provides an audience for focused HCP efforts) 
  • Telehealth Solutions: Virtual care isn’t just a pandemic stopgap – it’s here to stay (and can be particularly useful for patients with stigmatized or highly symptomatic conditions). As marketers, we can take it one step further by providing telehealth partners with condition education 
  • Doctor Discussion Guide: A crucial tactic to empower rare disease patients and caregivers to have productive conversations with doctors who may not be familiar with their disease
  • Robust Diagnosis & Testing Support: Tactics that can facilitate earlier, more accurate diagnoses include lists of questions to ask patients, clear, stepwise protocols, connections to labs or genetic testing partners, and more
  • Patient Support Programs: Essential for access and retention, these programs can make the difference between a negative and positive treatment experience

5. Build an effective “bridge to brand”

DSE and awareness-building are obviously the first and most crucial elements of any rare disease activation. While these efforts usually continue long into the commercialization stage in rare disease (awareness still has to be raised!), it’s also important to think about how to “bridge” DSE audiences into a branded experience. 

Don’t worry, MLR teams – we’re talking only about proven, legal strategies. 

  • Website Link: In most cases, unbranded websites can provide a direct link to the branded website (sometimes with supporting context, and never with the brand’s name on the unbranded site)
  • CRM Path: If the original unbranded opt-in language is clear and correct, it’s appropriate to send branded comment to existing unbranded opt-ins (email and SMS/MMS)
  • Retargeting: No need to find net-new audiences – not everyone knows it, but unbranded website visitors can be served branded social and display ads 

Healthcare marketers are fortunate to have the potential to make an impact. It’s not an easy thing to do in this crowded digital age, where we’re all inundated with endless options. But let’s not forget that in the small towns of rare disease, we may be the first ones to show up with understanding, solutions, and hope. It is our imperative – and our privilege – to show up the right way. 

Julia Weiss is director of UX and content strategy, Ogilvy Health.