The Value of Openness: The PatientsLikeMe Blog

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you!

Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated.

2009 Quick Facts

• 2009 marked the debut of the PatientsLikeMeInMotion program.
• Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States.
• In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA).
• The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them).

2010 Quick Facts

• A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 in 2010.
• PatientsLikeMe members led teams of more than 1,000 people total wearing the recognizable, bright blue PatientsLikeMeInMotion t-shirts to events across 15 states.
• Together, member-led teams raised more than $15,000 for their charitable disease foundations through PatientsLikeMeInMotion donations.
• PatientsLikeMe teams were present at 20 NMSS events and 12 ALSA events, as well as fundraisers run by The National Alliance on Mental Illness (NAMI), The Epilepsy Foundation of America and the Parkinson’s Unity Walk.
• PatientsLikeMe had the opportunity to sponsor Team Mid New England at the U.S. Transplant Games in Madison, WI (see highlights here.)
• In 2010, we also launched our PatientsLikeMeInMotion Flickr page to host all of the photos our teams have submitted over the years. Check it out.

So, what will 2011 look like for PatientsLikeMeInMotion? That’s entirely up to you! Do you have an awareness event in your area you would like to be a part of? Sign your run/walk/bike team up for PatientsLikeMeInMotion and count on us to support you – both online and off!

Ever wonder what your fellow members were up to on their sponsored walks and runs in various states across the country? Last week, PatientsLikeMe launched a Flickr page for the PatientsLikeMeInMotion^TM program. Now you can see photos of members just like you in motion!   We are excited to share the experience of sponsored teams and three-star members with everyone.

Since its inception in 2009, PatientsLikeMeInMotion^TM has sponsored more than 115 teams across seven disease communities.  With over 2, 100 participants to date, the program has given many members the chance to demonstrate their PatientsLikeMe spirit as well as connect with others who have shared similar experiences.

It’s always great to see how PatientsLikeMe members are just as passionate offline as they are online.  Now, everyone can catch a glimpse our members in action from New York to Ohio to California!  The PatientsLikeMeInMotion^TM Flickr page currently hosts photos from walks in the ALS, MS, Parkinson’s, Transplants, Fibromyalgia and Mood communities…with more to come.  We are proud to feature events such as The National MS Society’s “Walk MS” series, ALS Association’s “Walk to Defeat ALS” series, Parkinson’s Unity Walk, and events run by the National Alliance on Mental Illness (just to name a few). Have photos you would like to submit? We would love to see them.  Email us.

Thank you to all the members who have contributed their time and photos to PatientsLikeMeInMotion^TM. You continue to inspire others.  And thanks to all the members of the PatientsLikeMe community for continuing to share.

Just on the heels of MS Awareness Month, here’s one more interview with one of PatientsLikeMe’s nonprofit partners.  For this interview, Molly Cotter, who handles Nonprofit Partnership Development at PatientsLikeMe, sits down with National MS Society of Greater New England’s Development Director Todd Krohne to discuss exciting things happening with his chapter, including their new “We Keep Moving” campaign.  The NMSS of Greater New England is helping spread the word about our site and the PatientsLikeMeInMotion^TM program and we are happy to report that six of our 3-star patient members (to date) will have teams sponsored by PatientsLikeMe at MS Walks in the New England region this Spring.

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	(Molly) During MS Awareness Week last month, NMSS launched its “We Keep Moving” campaign to “catapult our movement toward a world free of MS.”  What’s that campaign all about and why is it important for patients?
	(Todd) Living with multiple sclerosis is a challenge, no matter where you are. Imagine what it’s like living with MS in an urban high rise — or in rural America where the closest MS specialist is 250 miles away, by bus. “We Keep Moving” is a website that will chronicle a ten week journey across the country. Unique stories and perspectives — challenges, triumphs and everything in between — will be shared. Submit your story and share in the journey as we learn about how people keep their lives moving forward. Go to www.wekeepmoving.org. This initiative is supported in part by Novartis Pharmaceuticals Corporation. Greater New England Chapter member, Anna from Shrewsbury, is a finalist this week in the “We Keep Moving” video contest, and she needs your vote to have her story produced on video!  Read more about her story and vote for Anna here.
	(Molly) In 2008, PatientsLikeMe sponsored the MS Challenge Walk in Cape Cod, MA. What a great event!  This year, the NMSS of Greater New England has helped us spread the word about PatientsLikeMe and our pilot PatientsLikeMeInMotionTM program.  What excites you most about this new program?
	(Todd) PatientsLikeMeInMotionTM is a fantastic way to motivate people to take action and to generate resources, both financial and human, to fund research into prevention, treatment, and cure of diseases like multiple sclerosis, and to help people whose disease has hurt them financially. Throughout history, the fight against disease has been fueled by individuals raising money for basic science research to unlock the mysteries of a disease and produce clues for curing it. PatientsLikeMeInMotionTM is another channel to communicate with people and help them understand that if they don’t take action to move forward, no one else will.
	(Molly) As we wrap up MS Awareness Month, any exciting things happening at NMSS of Greater New England for patients - e.g., research, events, online campaigns?
	(Todd) We’re very excited to announce that as of March 1, 2010, Maine, Massachusetts, New Hampshire, and Vermont joined forces to become the ‘Greater New England Chapter’, serving a combined total of 19,000 individuals and families affected by multiple sclerosis.By consolidating administrative functions and by combining the talents of our Boards of Trustees, staff, and volunteers, we can streamline operations, increase fundraising effectiveness, and expand programs, services, and advocacy for those affected by MS.Of course, Walk MS and Bike MS and the MS Challenge Walk are very exciting ways to join the movement to create a world free of multiple sclerosis.  These fundraising events are just as rewarding to the individuals who participate in them as they are to people with MS who benefit from the MS education, support, advocacy, services, and research that the fundraising pays for, and sometimes they are the same people!! For a complete listing of current programming and fundraising activities, visit www.MSnewengland.org.
	(Molly) Thanks, Todd!

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year!

Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions).  Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ‘09:

“I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”

“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis AGM in Athens and updates on our lithium study at the International ALS/MND Symposium).  In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform.  By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question:  “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.

The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.”  Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing.  Here are some highlights from ‘09:

• Partnerships: Earlier 2009, PatientsLikeMe announced partnerships with biopharma leader UCB to launch an epilepsy community next year and personal genomics company 23andMe to help people with Parkinson’s.

• Government: Piloted in our MS community this year, PatientsLikeMe members now have the ability to voluntarily report adverse events directly to the FDA; in fact, Jamie recently presented about adverse event reporting at an open FDA hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.”  PatientsLikeMe was also one of the collaborating organizations responsible for writing the Declaration of Health Data Rights and launching HealthDataRights.org this past June.  Finally, Jamie testified before the National Committee for Health and Vital Statistics, and gave an exciting rapid-fire presentation on the future of medicine at the Gov 2.0 Summit.

• Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events.  Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil.  You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.

• Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.

Happy New Year!
- The PatientsLikeMe Team

With 13,000+ members, the Multiple Sclerosis (MS) community is currently the largest community at PatientsLikeMe. Many of our members are just as active online as they are off. There are a countless number of ways for people to get involved in supporting research for the disease, and many patients choose to participate in the thousands of walks and runs that take place year round. At PatientsLikeMe, our members have a voice in research by sharing data about their condition.  However, we also support patients’ decision to take their involvement offline.

Earlier this year, PatientsLikeMe introduced a program to support and sponsor Walk/Run teams. We are encouraged by the success this initiative has already seen since its inception. To date, hundreds of people across all our communities have participated in teams sponsored by PatientsLikeMe, with many of those teams from our MS community.

Want to see some of our patients in action? Head on over to the PatientsLikeMe YouTube page at www.youtube.com/PatientsLikeMeMS and check out some of your fellow patients on the move.  All the pictures from the video and more are also in our Facebook photo album, so check them out (and while you’re there don’t forget to friend us either!) Thanks to all who participated in the program and gave us the material for this first video. Keep on walkin’ everyone!

(Special props to our summer intern, Shane, for editing the video and producing the music for it!)