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I love my job. Every day for the last four years, I've had the privilege of working for a company that puts the needs of those we serve before our bottom line, and over the last decade has never lost sight of its mission: effect meaningful change in healthcare by putting patients first.
PatientsLikeMe is a free patient network that improves lives and a real-time research platform that advances healthcare. People share their experience with disease so they can track how they're doing, help others like them, and contribute data for research.
This inspiration for PatientsLikeMe started back in 1998. That's when Stephen Heywood was diagnosed with ALS, and his two brothers, Ben and Jamie, immediately went to work trying to slow his disease progression. After a failed trial and error approach, they knew there had to be a better way. And so in 2004, along with family friend Jeff Cole, they founded PatientsLikeMe.
What started a decade ago with one patient and one family's experience with a life changing condition swelled to a community of half a million members sharing real-world experiences on more than 2,500 different conditions, including: ALS, multiple sclerosis, Parkinson's, Fibromyalgia, cancers, mental health, and other chronic, rare and sometimes fatal diseases.
So when we talk about marketing, we're not just talking about top-of-funnel lead generation or member retention programsâ¦we're talking about accelerating medicine through the patient voice. We're talking about making healthcare better, together. We're talking about changing lives.
It's that mission that drives all our marketing and communication efforts. And we do it by embracing these three pillars of engagement: know your audience, map the journey and give back to the people who give to you.
I first met Lori when we interviewed her for our blog. Lori was living with idiopathic pulmonary fibrosis (IPF), a rare condition where over time your lungs lose the ability to use oxygen. Prognosis after diagnosis is just three to five years and the only thing that someone can do to survive is get a lung transplant.
Lori was very generous with her time. Already an active patient blogger herself (RealityGasps), she did four interviews with us chronicling her journey with IPF. We got to know Lori and for many on the team, including myself, her story was personal. So when Laura (another IPF community member) posted in the forum that Lori had been wheeled into surgery, we huddled around the computer to follow the live feed Lori's family was posting. Three weeks after getting "the call," Lori was back on PatientsLikeMe, updating her friends and the community that she was home, resting and recovering with a new set of lungs.
Lori was one of the lucky ones. The IPF community on PatientsLikeMe is the world's largest online registry of IPF patients sharing their real-world experiences to help themselves and others, so we've seen our share of heroism and heartbreak. Like when our friend Bryan, an active PatientsLikeMe IPF community member and inaugural member of our Team of Advisors, passed away in 2014. Bryan selflessly shared his experiences with the community, and his data and memory live on to this day.
Knowing our audience isn't a line item or a box we check. It's who we are. And it meant that in 2014, when the FDA made an unprecedented announcement, we were ready. On the same day in October, the FDA approved two new and potentially game-changing treatments for IPF, a condition that up until this moment didn't have a single approved therapy. They were Ofev and Esbriet.
With no client stakeholder, but seeing a chance as these treatments hit the market to drive new understanding by engaging the members we'd grown to know over time, we set to work creating a research journey that was customized and personalized.
If you don't know where someone just came from⦠If you don't know where they're going to⦠If you don't know the objective⦠you're screwed. On top of the foundation we lay by knowing our audience, we diligently map out member journeys with every possible touchpoint.
When we started the research initiative with the IPF community, for example, we laid out six objectives we wanted to learn directly from our members about: their awareness of the treatments, conversations they were having with their care team; access issues or barriers they encountered to treatment; when they started treatment; how they would evaluate the treatment; and what would cause them to stop or switch treatment.
Then we identified where all of that data and information lived. Some of it members were already reporting on their PatientsLikeMe profiles, some of it lived on multiple pages of the site, and some of it we weren't yet capturing. With this in mind, we mapped out a journey that would capture all of the data in a way that made sense to each individual, whether they were on treatment or not.
When you're planning your customer journey, map it out. Work until you've got it right, but don't be afraid to iterate if your plan isn't meeting your objectives.
If you participate in research, we believe you deserve to know the results of that research; to take control of your health, become a partner in your own care and improve your quality of life. So when we mapped the IPF research journey, giving the data back wasn't an afterthought. It was part of the experience from the start.
By crafting a customized journey, we were able to get deeper data, faster. We could see beyond the drug label and learn about patient experiences not just in a snapshot of time, but as an experience over time. And most importantly, we were able to drive those insights back into the community so patients could learn from the experts: others just like them living with IPF.
We shared back both the quantitative results (data in numbers) and qualitative results (data in words). We posted it in the forums. We direct our members to them. And to this day, the community is having an ongoing conversation about the benefits, risks, changes, barriers, side effects and successes of these treatments. The community is empowered through the research they themselves took part in to become an active participant in their care.
But if all that didn't convince you, I'll leave you with this. Giving back is just the right thing to do. Period. Whatever your version of giving back is, you should do it. It creates an environment of cyclical engagement, where no one gets left behind, and it builds trust between you and those your serve. For us, we're here to serve the patient. We're here to serve people like Lori and Laura and Bryan.
To learn more about PatientsLikeMe's approach to customer journeys, join Brian for his session at Dreamforce on October 5 at 10:30 a.m. in the Twin Peaks room of the Palace Hotel.
About Brian Burns, Director, Member Communications at PatientsLikeMe
Brian has been with PatientsLikeMe for four years, working to ensure the member experience is the best it can be. For him, it means creating and disseminating content that is relevant and timely, and that demonstrates to members the value of participating on the platform. He directs a team of content managers, email marketers and copy creators who engage members in the community and build customized longitudinal research journeys, all supported with on-brand communications and journey implementation.
