No one can deny that PatientsLikeMe is a success story. From its humble beginnings as an online community for patients living with ALS, PatientsLikeMe has grown to be the largest social network and patient community online. The numbers recorded for the “not-just-for-profit” company are astounding: over 300,000 members who have entered data about 2,300 diseases, $32M of investor funding to date, and 4 key Fortune 500 business partners in 2015 alone. Like other social network sites, the success seems to only accelerate overtime.
Before we declare PatientsLikeMe the winner, let’s take a look under the hood of how this company operates. First and foremost, the company operates as a “patient community” platform. Patients log onto the website to compare and discuss their disease and treatment with others like them. Users enter real-world data on their conditions (treatment history, side effects, hospitalizations, symptoms, etc), and can compare their results to others in the community. Beyond the dashboards, they can chat with others in discussion forums to share experiences. Overall, this becomes a powerful platform for people wishing to seek support during an often-difficult time in their life. PatientsLikeMe was, and is, simply better at providing this support then many other options out there.
To earn revenue, the company (as outlined in a back section of its website):
“We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services.”
Click to enlarge. Source: http://bmtoolbox.net/companies-and-stories/patients-like-me/
Overall, the company has been a runaway success and a textbook example of both direct and in-direct network effects. By being the best platform, patients came to the site to share their information. The more information they shared, the more valuable the platform became for each user. This data was unquestionably valuable to 3rd parties (i.e. pharmaceutical companies), who have purchased the data. Indirectly, patients may benefit in the long-run as drugs and products are created which better meets their needs. Move over Google, a new player in town has looked at your core data selling business model and found a new use!
However, before we sit back and praise digital innovation as the saviour of the healthcare industry, lets take a little walk through history. Patients and pharmaceutical companies have had a difficult marriage over the last 30 years. To be clear, both need one another and, at the core, both win when each is successful and well served. However, in the past this marriage has gone through good and bad years. Great years have included the collaboration of groups such as the Cystic Fibrosis Foundation and Vertex Pharmaceuticals in the development of life changing medicines. Difficult years have included the AIDS Healthcare Foundation protesting the prices of HIV medication from Gilead Sciences. At the core, these conflicts occur because the incentives of the pharmaceutical and patients can be misaligned. Patients wish for their disease to be cured, and for that cure to come to everyone. Pharmaceutical companies seek for the same outcome, but also need to return profits to shareholders. If profits and patients are in tension, we find issues.
As PatientsLikeMe moves forward they need to be careful to keep one eye to the past. One misstep in how patient data is used could cause all trust with the site to be lost: one unaffordable drug launch praising PatientLikeMe data, one data breach, one rouge partner could cause the whole stack of value to collapse. For now, no major scandal has been revealed, but this risk increases exponentially as more partners are brought on-board.
As PatientsLikeMe loudly celebrates the number of “data partners” they have signed in 2015, they should quietly work furiously to beef-up their due diligence, monitoring, and PR teams.