PatientsLikeMe founder Jamie Heywood: patient engagement is vital to drive change in care

Heywood spoke at the Society of Participatory Medicine's annual conference about the importance of patient involvement, and how the company is continuing its work following this summer's acquisition by UnitedHealth Group.
By Laura Lovett
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In 2004 PatientsLikeMe emerged as one of the early players on the digital health scene. Its platform was designed to connect patients with different symptoms and conditions, and collects patients' voluntarily submitted data for research. Today the company is still focusing on participatory patient involvement but has seen major changes, namely its summer acquisition by UnitedHealth Group.  

Yesterday at the Society of Participatory Medicine’s annual conference, PatientsLikeMe founder Jamie Heywood discussed the role of patients’ voices in medicine and the future of the company.  

“I think part of participatory medicine and the participatory process is that we have the right as patients to ask why,” Heywood said. “The asking why forces the system to turn on itself and say why are we not performing.”

Heywood said that in the future patients will have more technology and information at their fingertips, which will also drive healthcare. 

This summer PatientslikeMe made headlines when it was acquired by UnitedHealth Group. This came after stories circulated in April that PatientsLikeMe was seeking a new buyer due to concerns of foreign investment and influence.

Specifically, CarbonX — a health data and genomics company founded by scientist Jun Wang and heavily backed by Chinese mega-conglomerate Tencent that played a major role in PatientsLikeMe’s $100M funding round back in early 2017 — was facing pressure from the Trump Administration's Committee of Foreign Investment in the United States to divest its substantial stake in the company. 

Months later, there are still a lot of questions about this move will look like for PatientsLikeMe — both for users, and for Heywood himself.  

“We still haven’t figured out exactly what we are going to do with UHG as part of our business model,” he said. “I have to admit I was very surprised when UHG came and talked to us, not just because it was UHG but [because] we had tried to address the payer, provider market five years ago and it was not typically receptive to thinking about how to be patient centered."

Heywood stressed the potential of aligning healthcare and related tools, noting that acquisitions like theirs are driven by a problem-solving mindset prevalent throughout the industry. 

“What I will say is we’ve been there for four or five months now,” he said. “I think again this problem [healthcare] is hard and what I see is a lot of really talented people trying to figure out how to bring alignment to [it] … and I don’t think it’s just UnitedHealthcare Group. I think there is a lot that is going on that is trying to figure out how to bring alignment to it.”

While the future of the company isn’t exactly clear, Heywood said the best way to identify needs across the system is and will continue to be feedback from patients

“I believe in this room and these ideas there is a vivid perception of the gaps that we have not been paying enough attention to, and I think what has been pioneered has been sadly undervalued,” he said. 

As for the future Heywood stressed that patients calling out the system is what will continue to create change. 

“Someone stands up and says it is unacceptable, and says there is a better way and I’m going to find it, I’m going to demand it and I’m going share it,” he said. “That is the advocate, and you know what changes doctors’ behavior? It is those patients.”