Patients Have Power: A Seat at the Digital Table

Digital health is at the forefront of innovation and keeps the world on the edge of its seat with each new and exciting release of the next best thing in healthcare.

But digital health is lagging far behind the curve in one critical area — patient advocacy.

Over the past decade, biotech has experienced a transformation geared towards prioritizing patient engagement. This demand has come from a variety of pushback — from FDA regulation to patients themselves. Patients and caregivers increasingly have a seat at the table when it comes to drug development, but the world of digital health hasn’t adopted this trend.

Google “biotech and patient advocacy”. What comes up? Conferences dedicated to patient-centricity, open patient advocacy roles at companies and articles championing biotech for ensuring the patient voice is heard.

Google “digital health and patient advocacy” and the results are drastically different. Digital health has dubbed itself the “ultimate assistant to patient advocates.” And this is absolutely true…but are patients involved in building the very tools designed to serve them?

By now, we’ve all learned that integrating the patient and caregiver voice early and often in biotech isn’t simply to build good will. Patients provide powerful insights for biotech companies, from ensuring clinical trial design will lend itself to enrollment all the way to playing an integral role in FDA drug approvals.

Upon further research, I was shocked to learn that patient engagement early and often isn’t the status quo for digital health companies. It appears that the vast majority don’t employ a patient advocacy role, and if they do, it’s only after the company and its product is well established.

This is a fundamental problem that must change. How can digital health companies expect to develop a useful tool for patients and caregivers if they aren’t regularly consulting them to build a product designed for their use? And no, the few times you reach out to one or two patients to get feedback on your latest feature is not enough.

So how do we work to change the status quo in digital health? We educate. We learn from industries and companies who are doing it well. And we challenge each other to prioritize the patient voice.

There are three key pieces of advice I encourage every digital health company to remember when considering the integration of patient advocacy into a company.

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. From day one, you are developing the fabric of your company. You want to ensure that you are clearly defining the patient voice as an integral and respected element of your company.

Clara Health’s co-founders 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. We recently ran a company survey and I am proud to say that every single person — from the co-founders to engineers and the marketing team, made mention that they are honored to be a part of something that is going to transform the lives of patients.

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 patients. Without someone who’s sole responsibility it is to work with patients, you will fail to capture a true understanding of what you should be building.

Patients have power

Patients are the experts in their journey and they ultimately hold the power in deciding if your company lives or dies. If you don’t build something that is truly useful to patients and caregivers or even worse, you are not trusted by the patient community, you will fail. Never underestimate the power that patients hold.

To my colleagues in the digital health community, I encourage you to step up and demand the patient perspective. We are eager to have a seat at the digital health table. And once you let us in, I promise you won’t be disappointed.

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