The Value of Openness: The PatientsLikeMe Blog

Today, the PatientsLikeMe Multiple Sclerosis (MS) community welcomed its 10,000th patient member!

As we end 2008, more than 10,000 patients in our community are coming together to share their life experiences on PatientsLikeMe. How much experience is that? Try more than 32,000 YEARS of collective experience with MS.

More members than ever are sharing in-depth health information with each other, having repeatedly seen the value that this provides to others (and to themselves). Our forum is where members convene to find support and talk about all sorts of health-related topics, including MS-related treatments. Copaxone, Avonex, Tysabri, Baclofen, Rebif, Betaseron, LDN and 4-AP and others top the list of treatments discussed this year. In addition to our dedicated treatment evaluation reports, several members also use the forum to keep journals of their experiences with specific treatments to better help others understand these meds. There is also a good deal of discussion on dealing with other aspects of MS, such as depression, steroids, family and relationships, etc. To date, the forum has more than 17,000 posts.

Ready to share your experiences with us in 2009? Check us out to see what patients like you are doing to live their best life with MS.   Happy New Year!

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…

You’ve spotted us again!  This weekend, PatientsLikeMe was a proud sponsor of the AIDS Walk/Run at Grant Park in Chicago on September 20, 2008.  The event, benefiting the AIDS Foundation of Chicago and 70 other local organizations, brought together more than 7,000 people on this warm, sunny day to show their support in the fight against HIV/AIDS.  Together, participants raised a projected $400,000 for AIDS-related services.

David Williams, Catherine Brownstein and I were at this event, and we were thrilled to meet so many great people, including one of our current members.  As we saw at the AIDS Walk in Boston, there were an overwhelming number of support groups and organizational leaders there dedicated to helping patients.

The PatientsLikeMe HIV community, in particular, was met with great enthusiasm.  Our booth visitors loved that we had social networking components on the site, but were more excited about the patient profiles and treatment reports.  We displayed sample profiles to show how members can chart their treatments, symptoms and outcomes (like CD4 counts and viral loads), and use that information to find others exactly like them.  Many people had heard of websites that offer a place to chat with others, but this health data-sharing approach was new and interesting to all.  Let’s just say heard a lot of  “wows,” which is always exciting and validating for us.

If you’ve been following our blog, you’ll notice that we’ve been out and about quite a bit this Fall spreading the word about PatientsLikeMe.  We’ve exhibited and presented at many events, including the Young-Onset Parkinson’s Network Conference, DBSA Annual Conference, MS Challenge Walk and now the AIDS Walk Chicago.  We hope those we’ve met will find their way to our site, and share their stories, their health data, and their passion for advancing the knowledge of these conditions.

We’ll be here – our community arms wide open.

Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for Patients and Consumers.” You can view the entire conference proceedings online.  The event is organized by Gunther Eysenbach, MD MPH, who is the editor and publisher of the Journal of Medical Internet Research, where Jeana Frost and I recently published our paper - “Social Uses of Personal Health Information Within PatientsLikeMe.” 

This was a great opportunity to update the research community on how our patient members are engaging in data-driven discussions about their health.  In my presentation, I gave an overview of the site, summarized some of our published research results, and provided examples of how patients are using our forum and profile comment tools to better understand their own and other’s experience of symptoms and treatments.  What really impressed this audience is that PatientsLikeMe is delivering the best of what “medicine 2.0″ can potentially deliver to the healthcare consumer, and patients are using it.  It’s very powerful for others to see how patients are talking with one another about treatment and symptoms experiences (supported by data in their profiles) to achieve better living.  This is exactly what can happen when we put “Patients First,” and give them a community to support the right interaction at the right time.  Our patient members today feel empowered to take back their health, and this kind of commitment will lead to better research, better healthcare and better quality of life.