Patient Advocates

Engage Patients as Consumers, the Airbnb Way

When it comes to engaging patients, healthcare should take a cue from consumer-facing industries. Why? Patients are consumers. We’ve begun to see a major shift in the healthcare landscape. In the age of Google, patient communities and advocacy organizations, patients are increasingly empowered to take charge of their own health and be the CEO of their care teams.

If patients are consumers, isn’t it obvious that we should be engaging them in the development of products and resources designed for their care? It’s the status quo; consumer-facing industries engage with their audience to fully understand what will resonate.

My favorite example comes from Airbnb. When the company was in its infancy and on the brink of failure, co-founder Joe Gebbia landed on an unexpected turning point when he hopped on a plane from San Francisco and flew to New York City. While there, the Airbnb team knocked on the door of every one of their hosts (there weren’t many back then), offered to take professional photos of their listings, and engaged in in-depth conversations over food and drink to learn from their power users. Only by getting this deep into the details were they able to understand their users’ needs. Photos, in-person meetups, old-fashioned door-to-door salesmanship: These are the things that set Airbnb on a path to greatness.

This is something that all of us working in healthcare can learn from. Whether you work at a digital health startup, a biotech company, or a hospital, all of us should prioritize consulting with patients to do better for them. Not only is it the right thing to do…it’s simply good business, too.

So how do we effectively engage patients in a meaningful, Airbnb way? While specific tactics will of course depend on the organization, there are a few key guiding principles for effectively engaging patients:

  • Listen. This is true by the bedside, and in developing a drug, an app, or a patient-facing resource. Taking the time to truly listen to and think critically about the patient journey is essential.
  • Bring in a patient advocate as early as possible. And by as early as possible, I mean that a patient advocate should be a member of your founding team or advisory council. By doing so, you weave the patient voice into the fabric of your organization from day one.
    I can speak to the importance of this. The co-founders of Clara Health—a company that helps patients find and enroll in clinical trials and supports them throughout the process—brought me on as head of patient advocacy and a member of the founding team. Not only has this ensured the patient remains at the heart of our product, but it has helped to keep the entire team laser focused on our mission to support patients. Weekly, we host a patient feedback roundup to ground the team in why we do what we do and to ensure that each member of the team is constantly thinking about the patient perspective. And by doing this regularly, we built a team that thinks about the patient. As we became more disciplined about this habit, we found our product evolving and addressing our users even better.
  • Remember one patient doesn’t represent all patients. As an autoimmune patient myself, my team could theoretically consult me as a patient as they develop the product. But I am one patient with one journey and believe that to truly capture the patient perspective, we need a diverse set of patient voices informing the development of our platform. It is my team’s job to capture these patient and caregiver perspectives to ensure we are building the best possible tool for all Without someone whose sole responsibility is to work with patients, your team will struggle to capture a true understanding of what you should be building.

Lilly Stairs Since being diagnosed with psoriatic arthritis and Crohn’s disease in 2011, Lilly Stairs has dedicated her life to patient advocacy. Lilly currently works as the head of patient advocacy at Clara Health where she is responsible for conceiving and executing patient engagement strategy and ensuring the patient voice remains firmly at the center of the company. She is a board member for the American Autoimmune Related Diseases Association and also works closely with notable healthcare and biotech companies to ensure their initiatives remain patient-centric.

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