Ux Design, Democratizing Data, and Anchoring Scale: What I learned from Jamie Heywood

By Claire Topal

I recently interviewed Jamie Heywood, Chairman of PatientsLikeMe, for our HoneyBee Chronicles about his views on biosensors and digital health. He’s known for walking the walk when it comes to patient empowerment and open access to data; his insights were inspiring and refreshingly big picture. Here’s what I learned:


First, UX designers are essential to addressing healthcare challenges. After all, some of the biggest challenges in healthcare are not technical or clinical; rather, they have to do with figuring out the best and easiest ways to enter, interpret, aggregate, and communicate data. Jamie’s comments reminded me of how all the doctors I know physically wilt when asked how technology and data connect with their day-to-day work. Maybe UX designers are the missing link between raw data and actionable information in healthcare?

I also learned that digital health and biosensors have the potential to democratize access to clinical-grade data, which could in turn lead to more and better health solutions. Before talking to Jamie, I tended to consider the types and volume of data digital health facilitates, but I didn’t really think about the access to data it creates. My naïveté reinforces Jamie’s point: improved access will increase awareness and inspire consumers to demand better information. A 2013 report in the New England Journal of Medicine came to the same conclusion; namely, that expanded access to clinical data could allow for a greater scientific innovation and a more accurate representation of a health solution’s safety and effectiveness. Privacy and security concerns are important to consider, but after walking on the moon and creating the Internet, surely we can figure this out.

My third takeaway is about population-level opportunities (where Jamie sees Project HoneyBee making the most impact). While he was quick to point out the value of the innovative one-off experiments digital health facilitates, he told me that the real game-changer will be a common assessment framework to anchor and validate information at scale, regardless of the specific technology. This is important to Lee Hartwell, too, who has made it a key Project HoneyBee goal to build a validation process that is agnostic of device, app, or disease. Scale is the whole point.

Ultimately, the future Jamie described is about empowering individuals to take responsibility for their own health, ideally before they become “patients” (a term with which Jamie took issue). This improves health outcomes, reduces costs, and makes healthcare providers’ lives easier, too. The goal isn’t just about transforming health systems, care, or research; it’s really about living healthy, happy, productive lives. Who isn’t on board with that?

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Written by Claire Topal