Last week, PatientsLikeMe (PLM) reopened its doors, this time for all patients, regardless of condition/diagnosis. This reopening was after a period in which PLM closed its site for several months to new members. During that time, Ben Heywood, one of the co-founders of PLM and current President, told Chilmark that PLM completely re-architected the site from the ground up to not only accomodate new members with virtually any condition, but also more proactively monitor “Quality of Life” criteria and allow for co-morbidity. These are features that both current members and prospective business customers (pharma) were seeking. (If you don’t know PLM and its history, it really is a very compelling, albeit heart-wrenching story of two brothers seeking to help a third brother who suffered from ALS.)
In its short history, PLM has grown to nearly 100,000 patients. How many are active is another matter, but still 100,000 is quite a few considering that the site only supported 22 conditions. Now many of those conditions are not nearly as rare as ALS, e.g. depression, but the main point is, patients were using the site to help one another outside the traditional boundaries of medicine and physician offices. This may be especially beneficial to those that suffer from rare diseases and find it difficult to understand what is the best course of treatment for their particular aliment as most often there are several to chose from, each with potential benefits and risks. Who better to guide them then fellow patients who share their disease, who might be farther along in treatment and have possibly tried a few treatment options and have knowledge as to their potential side-effects.
Chilmark has always been a fan of the PLM concept. It is simple, well-architected and can truly provide value to those that suffer specific diseases. Sure, there are plenty of sites on the web that attempt to do much the same thing but we have yet to find one that does it as elegantly as PLM. But as PLM expands beyond the well-defined confines of 22 disease states to any and all comers, will PLM stumble? Focus provides clarity, opening the doors to any and all conditions may degrade that clarity to a point that PLM no longer provides the depth and richness of experience that it has provided to date among those who suffer a specific disease. This could tarnish PLM’s reputation. Hopefully, this small company sees that potential risk and while throwing open the doors to all, also makes a strong effort to not only monitor what new communities are seeing the strongest growth, but look for those disease communities that have strong constituencies, regardless of size, and be proactive in recruiting them to become an active part of the PLM .