The Value of Openness: The PatientsLikeMe Blog

A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast conference held right here in our Cambridge, MA backyard.  It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S.  In the world of Health 2.0, we have a lot of great opportunities to impact healthcare in a positive way, including shaking things up and putting patients back at the center.  With so many new and promising companies emerging in the space (many in attendance at the Boston event), we have to start thinking about what happens next.  How can we really make change, and what changes need to be made?

I believe we, as the eHealth community, need to focus on two major goals:  1) solve patients’ problems, and 2) create business models that allow us to do #1.  The PatientsLikeMe business model is straightforward.  We build online communities where patients share structured information about their disease to help themselves and others.  In turn, we make money by selling that data.  We are open with our patients about how and why we sell this data (and specifically what data we sell).  They understand this exchange and they’re all for it. “Sell, sell, sell” someone recently wrote in a discussion about our business model.  Why?  Because they know our goal in selling is to help pharmaceuticals companies, medical device companies, healthcare providers, and others in the industry learn more about patients.  We’re giving those companies the kind of information that can help improve the products/services they’re creating for patients.

I don’t want to prognosticate about what types of business models will work for all Health 2.0 companies as the industry evolves (because, ultimately, this is an evolution).  It’s up to each company to figure that out.  I do believe that there’s no wrong path when you keep both those goals in your sights.  Help patients, and create business models to do that.  Moving forward as a company and as an industry, that’s exactly what we need to do.  Now let’s get back to work…

Last Friday (September 26, 2008), our Co-founder and President, Ben Heywood, was honored at the Boston Business Journal “Champions in Healthcare” award ceremony. Ben was one of two recipients recognized in the Innovation category. These regional awards highlight outstanding individuals and companies from the Boston-area who are making a difference in healthcare, including winners across five categories (Administrators, Community Outreach, Employers, Innovators, Nursing and Physicians).  Here is the full list of honorees.

Held at the Charles Hotel in Cambridge, the event was kicked off with a keynote address by Harvard Medical School’s Dr. Leonard Zon, an internationally recognized pioneer in the fields of stem cell biology and cancer genetics.  Next, Boston Business Journal’s Editor, George Donnelly, and Lisa Vanderpool presented each honoree with an engraved, crystal award in front of a room full of colleagues, family members and friends.  The winners were also profiled in a special edition of the paper last month (August 15, 2008).

It’s truly an honor for our company to be spotlighted in this way, particularly in our own “backyard,” which happens to be populated with some of the best and brightest healthcare professionals and companies around.  In his thank-you remarks, Ben touched upon his personal experiences that has brought him here, and thanked his team and the community.  He said it best -  “I share this award with the other two co-founders, my brother Jamie and our friend Jeff Cole, and our incredible team…Last but not least, I have to thank the patients.  Without them, we wouldn’t be here.”

Bringing the New Year in right, Benjamin Heywood, CEO of PatientsLikeMe, was interviewed by David E. Williams, publisher of the Health Business Blog (not to be confused with David S. Williams who works with PatientsLikeMe). In the interview, Ben discusses the future of the company, its ground-breaking Openness Philosophy, and the differentiation of PatientsLikeMe versus other Health 2.0 companies.

Here’s how David E. Williams characterized PatientsLikeMe:

PatientsLikeMe is one of my favorite Health 2.0, social networking websites. The online community enables patients with serious illnesses to build content-rich connections to similar patients. Patients are motivated to provide all the relevant information about themselves and to stick with the site over time to help one another. As a consequence, PatientsLikeMe users collectively generate robust data sets that have the potential to generate meaningful insights for researchers and commercial entities. That leads to some interesting business opportunities for the company.

The interview provides great insight about PatientsLikeMe. Enjoy!

PatientsLikeMe, the leading treatment and outcome sharing website for people with life-changing conditions, has been recognized by Business 2.0 and CNN Money.com as one of their 2007 “Next Disruptors: 15 Companies That Will Change The World“.

“We are honored to receive this recognition. However, we know we still have much to do in order to achieve our mission of helping patients learn from shared real-world outcomes so we can all contribute to finding the best treatment options,” explains co-founder and CEO, Benjamin Heywood.

PatientsLikeMe has taken an extraordinary position regarding patient data believing that openness and sharing, rather than strict privacy, is the best way for people to take control of their health care, improve outcomes, and accelerate research. The company has its Openness Philosophy posted on its website for anyone to view.

PatientsLikeMe also shares aggregated data from its members in order to share data with the world, recently announcing their data repository in ALS, Multiple Sclerosis and Parkinson’s.