The healthiest #GivingTuesday donation? A gift of data for Patients Like Me


Giving thanks is fine, Giving a Sh$t is better, but giving up some of your health data will make a difference.

That’s what Jamie Heywood and his team at Patients Like Me hope. On Tuesday, the health data portal for people with chronic conditions launched a 24-day drive to encourage new patients to sign up and share their health data before Christmas Day.

The Cambridge company has operated as a responsive social network that allows patients to connect and share information. Besides instantly charting and tracking an individual’s symptoms and stats for their own benefit, the portal supports forums where patients with the same condition can share insights, treatment plans, and other experiences. The company first launched to serve patients with ALS in 2006, but has since expanded to include patients with any chronic condition — epilepsy, Parkinson’s disease, multiple sclerosis, among others.

Patients Like Me is one of the early nodes in a broader movement across medicine to involve patients in their own health. Getting patients hooked on tracking their own data is a gateway to better management of their conditions, doctors have found.

The company routinely asks people to share their health data — things like their daily mood, weight, symptoms and treatment schedules — but the 24 Days of Giving campaign is a first time they’ve made a push part of a larger campaign.

“When people are sick they lose so much and one of the sad things about the losses you experience is that you are less able to help the ones around you,” Jaime Heywood, co-founder and chairman of Patients Like Me, said. “One of the things we came to realize is how therapeutic the act of helping someone else is through the act of giving your data.”

“The goal is to make sure there’s someone out there to answer your question, period,” Heywood said. “If you’re someone with a very rare disease, just finding one other person is a huge gift.”

Patients Like Me also anonymizes patient info and shares it with their research partners at places like the Mayo Clinic and Brigham and Women’s Hospital.

But what makes Patients Like Me really unique is the way it learns broadly, across its 300,000 members with 2,300 different conditions, Heywood says. Already banking some 25 million data points on disease, the company will consider a healthy bump in patient data an early Christmas gift, for science.

Photo via Flickr user Pete

Nidhi Subbaraman writes about science and research. Email her at [email protected]
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