The Value of Openness: The PatientsLikeMe Blog

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!)

Today is an exciting day for PatientsLikeMe.   In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research.

The news release announcing the partnership is below.

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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire - June 15, 2009) - Biopharma company UCB and PatientsLikeMe, the leading online community for people with life-changing conditions, today announced a strategic partnership to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the U.S.

Scheduled to launch in early 2010, this platform will be designed to collect, analyze and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen.

More…

Sharing.  It’s a concept we all learn at a very young age.  Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it.  It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum?   Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about.

You don’t need to be clairvoyant to see where I’m going with this.  Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special.  More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it.  It’s truly inspirational and something we believe is transforming healthcare as we know it.

But sharing doesn’t have to stop there.  From a marketing perspective, one of the most widely used and successful viral tactics is the “Share This” button.  You see it everywhere online - blogs, news articles, videos, and more.  We just recently implemented it across our site, so patients can “Share This” treatment or symptom report, press releases, research findings, etc.  It’s an easy way to pass that “toy” across the cyber-sandbox to others who might learn or benefit from it.

It’s nice every once in a while to think back to what we learned as kids and figure out a way to incorporate those values into our adult lives.  Sharing is just one of those things.

So you weren’t the type to share your toys?  Feel like you share too much?  Comments are welcome below.

Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community?  We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!

The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 - topping more than 3,400 patient members in just 24 months.  Our community members share so much about themselves on a daily basis - from details about how they manage their condition to their personal experiences and stories.  Why share?  Simply stated, to learn more about themselves while helping others better understand this condition.   In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.

Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.”  The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park.  PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team.  (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out  for 2009 highlights).

Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!

A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder.  It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine.

Since then, more than 8,700 patients have joined the community, sharing detailed information about their symptoms, treatments and overall progress to learn more about themselves and others. Besides specific drug therapies (like Clonazepam or Lamotrigine), did you know many patients cite Listening to Music and Journal Writing as top treatments as well?  Check out what they have to say.

Do you have problems concentrating?  That’s the number one symptom reported by our members.  Other top symptoms include muscle tension, headaches, back pain and stomach pain.

In the coming weeks, we will continue to share some interesting tidbits about the community, including some powerful personal stories straight from our members.  Stay tuned!

In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS, FALS). Until today, there was only one major causative gene that we knew about, called SOD1, which accounted for 20% of familial cases. Today’s new discovery of the gene FUS (also known as ALS6) accounts for an additional 3-5% of familial cases and was the result of an international collaboration between scientists in Boston, London, and Sydney. This is very exciting for research because the more we know about what causes ALS, the better our chances of finding an effective treatment through better understanding of the pathways involved in motor neuron degeneration.

Here at PatientsLikeMe, we’ve recently upgraded our ALS platform to capture data on familial ALS patients’ known genetic mutations. The goal is to help familial ALS patients find another patient like them, and to enhance understanding of the phenotype of each mutation, e.g. if different types of mutation cause a faster or slower disease progression. Ultimately our aim is to try and establish whether there might be any treatments that have a differential effect on patients with different disease-causing mutations. There are examples of this already known in other diseases; for instance the presence of absence of the Philadelphia chromosome in chronic myelogenous leukemia (CML) predicts whether the patient will respond to the drug Gleevec. Although there is currently only a single effective treatment for ALS (Rilutek), there are a number of trials underway investigating the potential of drugs for patients with specific gene mutations.

The unique outcome data captured on the PatientsLikeMe platform also allows us to learn more about the nature of the disease for FALS patients with different genetic mutations. In the graph above you can see the average rate of progression for patients with three different FALS mutations; the common and aggressive A4V mutation (sadly average survival is ~18 months), the rarer recessive D90A mutation (much longer average survival of ~13 years), and a very rare and recently identified mutation of VAPB, referred to as ALS8. Collecting genetic data and combining it with high-quality patient-reported outcomes helps a patient to answer the question “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”.

Note: If you have familial ALS and know your genetic mutation status please consider joining our ALS community and sharing your genetic information through your diagnosis history.

As we end the year, we give you the last 2008 video from PatientsLikeMe and the first of our new fibromyalgia community.  We asked this newly launched community to tell us “How are you overcoming fibromyalgia?”  This is what they had to say:

Thanks to all of you who contributed your “voice” to this video.   It’s truly a reflection of patients helping patients live better every day.  We look forward to hearing more voices in 2009!

Happy New Year!

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.