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 .
I have two personal experiences intertwined with this piece so will offer my thoughts in case it has value to others.
First is that we and many others tested the breadth and depth of communities for many years, and I think your observations and questions/fears are valid — critical mass is important not just for scale, but also quality– particularly in something as important as information on health. Probabilities are quite high that it would be much easier to accomplish and maintain adding one disease at a time if and when ready.
Second is that my brother also had ALS, which also attracted me to in-depth research among other activities, like more effectively dealing with spiritual issues– and ego, but I do not personally believe that it’s a good motivation for starting a business. Partnering with a foundation perhaps, or even developing science/ technology, but not necessarily a business. I heard from an entrepreneur recently who was seeking investors for a business that had partnered with a software giant, and his promotional pitch was an effort to improve health for his daughter. To me it looked like a guy trying to get rich from other people’s empathy, which may have been unfair, but it’s not uncommon in all kinds of entities.
While motivation can be a powerful thing, and no doubt counselors would advise that attempting to make things better is good therapy– mixed results for me frankly.
I gain primarily frustration by the HC system, which is full of obstructionists to improvement and misaligned interests with patients and science– that isn’t good for either the wallet or mental health; quite the opposite, nor would the latter be improved by getting rich by exploiting other people’s emotions. That said, the original motivation here is certainly understandable — ALS and other rare complex diseases are enormous learning curves for families under severe pressure, facing situation almost immediately that is more aligned with hospice than say cancer today.
It does not take long, however, for original motivation to take a back seat to the maze of conflicts in HC.
@ Mark Montgomery I have had to deal with ACM and Syringomyelia causing basically constant chronic pain for 10 years and I agree with you about the healthcare system being held back by people who are simply trying to profit off others misfortune. Chiropractors are my favorite example,as I saw a number for at least 2 years and not once did they forward me to a more specialized doctor despite NOTHING helping at all. They are popular because they sell positivity at a cheap rate vs the time,$s,and energy spent dealing with neurosurgeons/other specialized docs or the “acceptance” peddled by psychologists-nearly always with an antidepressant,which are being shown to not be as effective at treating pain as first thought. Popular chiropractors always end up being the ones good at selling their services.
I recently watched a film about Blaise Pascal, and was dismayed to Realize that not much has changed in terms of our ability to use our science and technology to address health in a positie way-we are still as stuck on shame salesmen as ever. Even where science and technology do touch human health, they often have equal if ot more negative impacts-Diabetes,Whiplash,Carpel Tunnel,Overworking,Video game addiction,and now the problems associated with energy use such as water contamination by fracking all make one wonder what we will end up achieving by becoming a technolgical society in terms of health. We do have people who can live to very old ages, yet at the same time a vast section of the world now deals with hunger more than every-with our market system,austerity projects,and biofuels (all products of “reason” and a science based 1st world) contributing directly to making hunger worse…..