PatientsLikeMe Re-Opens the Doors to the Chocolate Factory

April 15, 2023 - By Deb Linton

PatientsLikeMe is re-opening the doors to the chocolate factory but this time everyone’s invited. This week, the free online health data-sharing website announced the public opening of it’s latest expansion. Since it’s original launch 5 years ago, PatientsLikeMe has received requests from over 23,000 patients asking the company to “build a community” for more than 5,000 conditions. According to their recent press release, they’ve been asked to form patient groups for everything from the more commonly known conditions like rheumatoid arthritis, autism, diabetes and cancer to rare diseases like ankylosing spondylitis and Niemann-Pick disease. The site had previously serviced patients of only 22 chronic conditions (including ALS, Parkinson’s disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants) but, this week, they welcome patients with any condition to join.

In February, PatientsLikeMe closed to new members but allowed its 100,000 existing users to test out their new expansion. The improved design includes upgraded functionalities, such as adding co-morbidities to user health profiles and the improved ability to track mental, social and physical well-being.

As PatientsLikeMe makes its move from exclusive populations to a broader audience, it will be interesting to see if the sticky social formula that worked so well with chronic communities is transferable to other patient groups. President and Co-founder Ben Heywood explains, “[e]very ten seconds on our site, a patient shares an answer to a survey question about their health. Approximately every minute, one of our members is viewing another’s profile to see these answers. It’s clear patients see the benefit of sharing deep health information.” It’s also clear that PatientsLikeMe’s clean and easy-to-use platform will give existing patient communities a run for their money.

When Facebook swept the average college campus, it took about two days before people were shouting down the halls about friend requests, posting questionable pictures and finding new ways to connect with each other.  Although other sites like Friendster and Orkut had similar features, it was Facebook that forever changed the way we related to our personal information because it was easy to use, had social critical mass and was proven in other communities to be “safe enough.”

Most other social platforms went the way of the Liopleurodon after the well-timed expansion of Facebook. However, some niche networks survived because they catered to communities with specific needs. For example, the GLTBQ community took as quickly to Facebook as any other group but maintained it’s existing online networks and (with good reason) remained cautious about entrusting Facebook with certain information. It’s debatable whether this phenomenon was the result of a loyal user base, past Facebook security breaches or just that GLTBQ social sites continued to offer better features. But online networks that service populations with sensitive information have a history of enduring.

Deeply rooted online health communities like Diabetic Connect or dLife aren’t going to go away overnight but a PatientsLikeMe diaspora isn’t that far fetched. Although PatientsLikeMe is taking a step into a competitive arena dominated by massive networks like MedHelp and loyal patient populations like ACOR, they offer users an easy interface combined with an intimate and established community feel. They would have a long way to go before becoming the Facebook of healthcare but the strategy seems vaguely familiar.