Episode 2: Benjamin Heywood - How one of the world's largest online patient communities came to be
PatientsLikeMe, the limitations of reductionism in Western medicine and how sharing augments healing
Here is Episode 2 of the North of Patient Podcast:
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I had a chance to sit down with Benjamin Heywood. Benjamin and I know one another through our mutual work as mentors of healthcare startups at the Creative Destruction Lab. After a long conversation during dinner in 2023, I knew there was a lot more I wanted to learn about Ben and his story.
Benjamin Heywood is General Partner in the early stage deep tech and digital health focused venture fund SkyRiver Ventures. He prides himself on being a tech geek, mentor, and investor. He is a recovering entrepreneur after co-founding PatientsLikeMe in 2004, one of the world’s first and largest integrated online patient communities, with over 800,000 members at present. He is a proud #GirlDad and hails from the Boston area.
Our conversation ranged from talking about the personal circumstances that led to Ben and his brother, Jamie, founding PatientsLikeMe, to merits and limitations of modern Western medicine, to the optimism he finds in deep tech.
Top 3 Takeaways
Sharing is part of a healing framework
When discussing PatientsLikeMe, Ben spoke about how one of their profound discoveries in the success of the project was how important the act of sharing one’s own experience with an illness was.“Everyone we know is dealing with something, whether it's them directly or a family member… it's just universal. There's no one who's not touched by that. And somehow we're still afraid to talk about it. I think that was on some level, the most powerful thing we did. We helped redefine what it meant: 1) for patients to own their info, and 2) the idea that sharing is potentially part of a healing framework that's very important, and that you can do it technologically and at scale and it's not just neighbors over a fence.”
95% of data in EHRs will not be relevant in the future
Having worked extensively with massive real-world data in his 15 year long journey at PatientsLikeMe, Ben highlighted how they discovered how minimal the impact of data from EHRs (electronic health records) was in building precision medicine tools.“I think 95 percent of the data in the EHRs will not be relevant in the future of health care. Whether that's 10 years or 20 years from now, we're not building the Star Trek tricorder on EHR data that we have in the system today. It's going to be on novel biology and novel sensors that are being built right now.”
The key variable to optimize in a health technology business
A unique characteristic of health technology businesses, particularly those that involve a medical intervention, is know whether or not that intervention works. Unlike other businesses or domains, in healthcare there is very limited tolerance for adverse impact. This adds an important parameter with which businesses need to measure their speed and success.“The way technology improves things is rapid iterations, right? And in health care, you can't iterate quickly because you don't know whether something works. If it's a drug, you got to test it. And if it's an intervention, you got to wait. So the variable that you really want to optimize, and no one ever talks about this, in all of healthcare, is the time to know whether an intervention works. The shorter the time to know if an intervention works, the faster you can iterate and figure out what works for you.”
Ben’s take on healthcare in US the next 3-5 years
He predicts that seismic change in healthcare will take a longer horizon - likely in the 10-15 year range. The shorter term horizon will see improvements to the status quo through AI-mediated efficiency.
Ben also talked about the importance of the development of a functional data layer in healthcare that will allow innovation to properly take hold.
“I think there'll be a thousand flowers blooming when we have the infrastructure and the data layer that allows them to bloom...I'm very excited about where we're going. I just think it's going to take a lot of work to get there.”