Online Medical Communities: A Prescription for Success?

In this next-to-last week of #CMGRclass, students learned about scaling an online community.  In PatientsLikeMe: An Online Community of Patients, Sunil Gupta and Jason Riis discuss PatientsLikeMe, an online platform “for patients to share their personal experiences with a disease, find other patients like them, and learn from each other.”  Co-founded by MIT engineers Jamie Howard, Ben Heyward, and Jeff Cole in 2004, PatientsLikeMe (PLM) was an offshoot of Jamie’s non-profit biotechnology company, ALS Therapy Development Institute; both were in direct response to Jamie and Ben’s brother’s Stephen’s ALS diagnosis in 1998.

PatientsLikeMe was formally launched in 2006 and quickly grew to a size of over 80,000 registered patients in 19 communities – including 50,000 belonging to the largest communities dedicated to multiple sclerosis (MS), fibromyalgia, and mood disorders – by 2010.  By the end of that year, the company found itself at a crossroads.  The site had received an increasing number of patient requests for new communities focused on other medical conditions: in 2010 alone, over 5,000 requests were submitted for more than 1,000 conditions.

Up until that point, PatientsLikeMe had grown in a very regulated manner the number of conditions for which it had patient communities.  Communities were built one at a time and were dedicated to only one condition.  As Gupta and Riis quoted PLM chief marketing officer David Williams, “Since our communities currently work in silos, we do not provide a full picture to even our existing members who suffer from multiple conditions.”

Going forward, the team was considering the development of a General Platform (GP) to allow PLM to grow beyond its status as a “niche player” in its space.  However, while there was tremendous growth potential, there were also substantial risks.  The team realized that other conditions having larger patient bases and similar classification,  measurements, or medications would allow it to grow its member base and revenue stream.  (PLM was, and remains, a free site; its revenue is derived from the sale of aggregated health data to for- and non-profit businesses including pharmaceutical makers and universities.)  The team also acknowledged that the number of future enrollments, degree of member engagement on the site, and cost of new member acquisition were unknown.

PatientsLikeMe - AboutPatientsLikeMe went on to roll out the GP in April of 2011, welcoming all patients with any condition to join the site.  Its new platform is more holistic; rather than grouping patients by a single medical condition for which a community is formed, patients enter data on their current and past conditions, symptoms, treatments, and quality of life, and can interact on the site with patients having other conditions.  (PLM advises users that it is not a substitute for medical advice or treatment.)  In a recent interview with Fortune, the Heywood brothers revealed that PLM has over 200,000 users and encompasses over 1,500 medical conditions.

PatientsLikeMe

I was fascinated with those numbers and recalled a figure from Gupta’s and Riis’ case study.  In Exhibit 9, the authors cite PLM company documents identifying a sample of possible new PLM Communities.  Lupus, along with other inflammatory diseases like Crohn’s disease and rheumatoid arthritis, were the top of the list of conditions for which patients requested a community, based on the number of requests received in 2010.  I myself have lupus, and while I’ve visited a few online communities dedicated to lupus from time to time, I had never heard of PatientsLikeMe – but I was intrigued.

Patients Like Me - LogoSo, this week I visited PatientsLikeMe and created a profile – so completely, in fact, that I was eligible for a free t-shirt.  (Incentivizing valued community members, anyone?)  I learned that PLM has four very compelling core values (trust, openness, transparency, and the “Wow! factor”) and endeavors to achieve them via three primary patient services (learn, connect, and track).  In addition, I discovered that PLM aggregates patient data to inform medical research and pharmaceutical studies and has published over 30 peer-reviewed research studies.  Wow, indeed.

My time with PatientsLikeMe has been too brief to comment on whether PLM has successfully managed its rapid growth across its site.  However, I am extremely impressed with how PLM supplements the traditional online medical forum with a hands-on approach to monitoring one’s own medical condition(s).

Have you or someone you care about ever used a medical-related online community?  Was it useful in learning about treatment options, coping with a condition, or better informing the patient’s conversation with his or her doctor?

(Images taken by author via screen capture.  Featured image from PatientsLikeMeOnCall.)

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