The Value of Openness: The PatientsLikeMe Blog

In today’s news…

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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire - April 12, 2011) - In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe^®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents (55%) indicate a better understanding of their seizures, while one in four (27%) report improved adherence to treatment as a result of joining the PatientsLikeMe epilepsy community. When asked about their social interactions with other patients, one in three respondents (30%) said they did not know a single other person with epilepsy before joining the site; 63% of these said they were now communicating with one or more patients on the site.

The complete results from this survey of 221 epilepsy patients are being presented this week at the annual meeting of the American Academy of Neurology, in Hawaii, U.S. (April 9^th-16^th). In early 2010, PatientsLikeMe and UCB first invited U.S. epilepsy patients to share their seizure experiences, symptoms and treatments through the website; there are more than 3,600 members to date. UCB receives annonymized, aggregated data from the PatientsLikeMe epilepsy community…. >> Click here to see the full news release.

Today, PatientsLikeMe announces its expansion in the following news release. (You can click on the image on the right to see a visualization of real-time profile views on PatientsLikeMe.)

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CAMBRIDGE, MA–(Marketwire - April 11, 2011) - Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old free online health data-sharing website was previously only available to patients with 22 chronic conditions (including ALS, Parkinson’s disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants). In February, the company closed to new members and allowed its 100,000 members to test out its new design and upgraded functionalities, such as adding multiple conditions (or co-morbidities) to their health profiles and measuring their mental, social and physical well-being (or quality of life).

“Every ten seconds on our site, a patient shares an answer to a survey question about their health. Approximately every minute, one of our members is viewing another’s profile to see these answers. It’s clear patients see the benefit of sharing deep health information,” says President and Co-founder Ben Heywood. ”We’re excited to see how this openness and sharing will potentially change thousands more lives as we open the doors to every patient today.”

Since launching in 2006, members of the website have shared data on more than 9,700 treatments and 4,800 symptoms related to their chronic conditions. During that time, PatientsLikeMe also received requests from 23,000+ patients asking the company to “build a community” for more than 5,000 conditions, everything from the more commonly known conditions like rheumatoid arthritis, autism, diabetes and cancer to rare diseases like ankylosing spondylitis and Niemann-Pick disease.

Adds Heywood, “Patients can now share multiple conditions, symptoms, treatments and more through their profiles. With these changes, we’ve improved our ability to help people find more patients like them.’”

This year, we’ve finally found a few moments to get the team together and share our story as a company - and capture it all on video.  Below are some cool pictures of our video crew and PatientsLikeMe team setting up for a recent video shoot.  We hope to have the final video up soon, so stay tuned. Happy Wednesday!

2010 was a strong year for business development at PatientsLikeMe.  Our goal was - and continues to be - to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year.

Successes

1.  New Partnerships, New Communities

In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners.  UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community.  Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world.

As with all of our partnerships, we made sure the focus is on the patient experience.   For example, what are your perceptions about the medications you take?  How do you see these treatments impacting your quality of life?  Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes.

2.  Enhanced Services for Partners

When we create products and services for our corporate partners, it’s with a single objective:  to amplify the patient voice.  As a result, healthcare companies who wish to improve health outcomes have the information to improve their products and services accordingly.  In 2010, PatientsLikeMe further heightened the voice of patients by enhancing two existing products.

PatientsLikeMeListen^TM and PatientsLikeMeLandscape^TM

These complementary services help measure both the frequency and sentiment of treatment discussions in our community forums.  In 2010, we added functionality that allows our partners to see a longitudinal comparative view of patient sentiment (using  PatientsLikeMeListen^TM) as well as identify discussion topics that are rising within a forum (using PatientsLikeMeLandscape^TM ).  Both products help to elevate patient concerns and bring their importance and relevance to life for industry partners.

Challenges

As a for-profit health company that enables data sharing by patients, we knew we’d face our share of challenges.  2010 was no different.  Many groups, including patients, nonprofits, government and industry, had valid concerns about working with PatientsLikeMe because of our Openness Philosophy.

1.  Guidance on Industry Interaction with Social Media

One of the main (and valid) concerns our industry partners express is that the Food and Drug Administration has yet to deliver clear guidelines on how to interact with social media.  Dipping their collective toes into the social media wave pool is perceived as risky because the FDA levies severe penalties for companies attempting to directly sell to patients.

PatientsLikeMe has taken a leadership role in addressing this concern by further developing our PatientsLikeMeLeaders^TM service. After investigating all privacy and regulatory conditions, PatientsLikeMe has created a fully compliant solution for direct industry-patient feedback in an online forum that we moderate.  Now you as patients will be heard directly by those making decisions on what treatments are developed and how they are introduced, while our partners can learn what patients like you want and need - without fear of non-compliance.

2.  Being Open About the Data Scraping Incident

In May 2010, we discovered that a major media monitoring company had created a patient account and automatically downloaded forum posts in order to add data to their sentiment analysis client service.  Not only is that a violation of our User Agreement (”You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”), but it reduces the trust patients have with our site.

We dealt with this challenge openly by disclosing our discovery of this “data scraping incident” the day it occurred.  We sent a message informing all patient members, and about 200 patient members left the site as a result.  In October 2010, The Wall Street Journal included PatientsLikeMe in its special series on the benefits and risks of sharing health information online, with the practice of data scraping highlighted as a risk to patients.  We welcomed this article coverage and continue to engage with other leaders in this ongoing discussion.

Since our PatientsLikeMeListen^TM product measures sentiment of discussions in our forums, we reminded our members about this similar service.  We will continue to inform and educate our members about how we conduct business so there are no surprises.

Summary

In 2010, we continued to grow our patient communities and further confirmed that the success of our business lies in aligning patient and industry interests.  In fact, we have recently been cited by the Board of Innovation as one of 10 Business Models That Rocked in 2010.

Because of the sensitivity of sharing health data online, however, we remain upfront, open and transparent about our business practices so that patients like you can be informed participants in your health, medical research and the development of effective treatments.  Happy 2011!

With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network.  Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice.  To that end, our job in marketing is to share your stories and tell the world about our community to bring in more patients.

Here are highlights of some of the work we did this year to promote your voice and attract the 32,000+ new members we welcomed to the community in 2010.  (Enjoy the video recap below as well.)

Social Outreach

• With a full year under its belt, 2010 was a big year for the PatientsLikeMeInMotion^TM program. With slick new t-shirts and a new sign-up form, the program just about doubled in size from 38 teams in 2009 to 60 teams in 2010.  More than 1,000 people were rocking PatientsLikeMe t-shirts for their disease awareness walks this year and the company donated $14,800+ in our members’ names to almost 50 nonprofit organizations.  (More about our nonprofit partnerships and work we’ve done with them is coming from Molly Cotter next week).  Finally, we launched our PatientsLikeMeinMotion^TM Flickr page, which features hundreds of photos of all of you walking for team PatientsLikeMe.

• In January 2010, PatientsLikeMe launched its first ever podcast called PatientsLikeMeOnCall^TM (hosted by our newest marketing team member, Aaron Fleishman). Through a series of podcasts this year, PatientsLikeMe provided insight from our thought leaders on topics most important to you, spotlighted work with partners and gave patients a place for their real voices to be heard. With more than 1,000 subscribers to date, PatientsLikeMeOnCall^TM is ready to bring more content to all of our listeners in 2011. Thanks for stopping by and listening!

• Along with PatientsLikeMeOnCall^TM, PatientsLikeMe continued to spotlight what you’re saying, learning and sharing through our blog (yes, we do manage the content for this lovely page!), Twitter, Facebook, YouTube and more. Our Twitter followers continue to grow with more than 2,100 followers. Our Facebook page now has more than 1,000 fans and our YouTube videos have a combined number of 74,258 views total, with 35,469 views this year alone.

Media Coverage:

Throughout the year, PatientsLikeMe was featured in a number of media stories (see our press page) that highlighted how you are making a difference for other patients and the healthcare industry as a whole.  In fact, many of you were able to share your stories with the world - from your disease experiences to your participation on PatientsLikeMe.  Thank you to everyone who contributed!  Some highlights include: Fast Company (“2010 Most Innovative Companies”), Fortune/CNN (“Tweet your chart”), Wall Street Journal (“Scrapers’ Dig Deep for Data on Web”), Fox News videos, Women’s Health (“Feel Sick Click Here”), NPR (“What Happens When People Migrate To The Internet”), New York Times (“When Patients Meet Online”), TIME magazine (“Group Therapy”) as well as articles in Bio-IT World, InformationWeek, Nature Biotechnology, PharmaTimes, and SmartMoney.

Events, Direct Mail and Newsletters
In addition to attending some events (e.g., 2010 Transplant Games, Parkinson’s Unity Walk) to talk directly to patients, PatientsLikeMe also reached out to medical centers (e.g., epilepsy and transplants) to inform physicians about how patients are benefiting from being members of PatientsLikeMe (see above).

Finally, we’re thrilled to hear how much you enjoyed the monthly community newsletters in 2010.  Altogether, we published 90 newsletters this year and featured many of your fellow community members in patient interviews (which also appeared here on the blog). Based on your feedback, we also finally launched an archive section on our site so you can catch up on all the latest and greatest from PatientsLikeMe.

Spreading the word is what we do in marketing, and we can say it is has truly been a pleasure telling the world about all that you do and all that you share through PatientsLikeMe.  2011 will only be better.  Thank you and Happy New Year!

In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you - members of the PatientsLikeMe community - knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.

To continue the dialogue, we’re writing this blog to respond to a few recent articles that have suggested we do something other than what we’ve said.  See BNET’s “PatientsLikeMe Is More Villain Than Victim in Patient Data ‘Scraping’ Scandal” and Internet Evolution’s “Personal Data Mining: Government & Business Share Blame” (since corrected).

To start, the characterization as villain is nicely hyperbolic for a headline, but inaccurate.  Villains are dishonest.  As a company, we strive to be honest and transparent - both are key parts of our Core Values as an organization.  To that end, let us dig in on a few of your recent follow-up questions:

• Does PatientsLikeMe sell our identifying data (like name, photo, bio, etc.)?
  No. We’ve asked for a correction in the Internet Evolution article because their statement about scraping the names you use to sign up for the site is incorrect. In the BNET article, the author cited our Privacy Policy, which indicates what data patient members can share on their health profiles at PatientsLikeMe.  This is not the same as the data we sell.  In addition to linking our partners site right off our homepage (where we list out the products sold to partners), we also call out “how we make money” on the front page.  Part of this FAQ was cited, but the very important point about “personally identifiable information” is below:
  • How does PatientsLikeMe make money? We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.  (Read more)

• Is this a “privacy scandal”? To us, it’s not a discussion about whether or not health information should be private. (Don’t get us wrong - that’s an important discussion too, but we’re pretty clear on where we stand on that - see our Openness Philosophy). The issue here is that Nielsen was not given consent of the patients, nor PatientsLikeMe, to scrape information from our site. As we’ve said before, we believe this scraping incident was a violation of our User Agreement and a violation of patients’ trust.

• Isn’t PatientsLikeMe doing the same thing as Nielsen? In addition to our User Agreement and Privacy Policy, we also have a moral obligation to our communities to do the right thing. In this case it means: 1) having this dialogue openly and honestly; 2) being selective about the projects we work on and our partners; and 3) contractually obligating our partners not to ‘re-identify’ our patients with our data or other data (which would mean a pharma company would be taking on liability using a service like PeekYou in conjunction with PatientsLikeMe data).

Our site wouldn’t exist if we had to “persuade” you, the patient, to share your data. Many of you find value in sharing; value in that level of openness.  What you should expect in return is a level of transparency about what we will and won’t do with your information. We hope we do a good job of providing that transparency.  What do you think?

Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics,  scraped our forum last Spring.  (See my previous blog post on the incident - “Transparency, Openness and Privacy”)

Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more.  We are very excited about this article.  Having a rigorous debate about transparency, openness and privacy is critical to us achieving the trust we want to have with you, our patients.

What Nielsen did was clearly a violation of our User Agreement.  However, we believe this incident (and this article) have spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world.  As I said to Julia, this is a new frontier.  We also believe there’s a lot for everyone to learn from this experience, especially around how to put patients first.

Read Julia’s piece and tell us what you think.

Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind - to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care.  Together, we have come so far as a community in making those goals, those dreams happen.  Today, to close out ALS Awareness Month, we want to honor that journey by highlighting some of the milestones you as a community have achieved.

As many of you know, the journey started when PatientsLikeMe was inspired by Stephen Heywood, a young man diagnosed with ALS when he was only 29 years old. His brothers Jamie and Ben, and long-time friend Jeff Cole, built PatientsLikeMe and its flagship ALS community to help Stephen and other patients like him. After four years since launching the ALS community, more than 4,500 of you - our PALS - are still sharing your data and experiences to help others. Along the way, we’ve lost some of our friends, including Stephen, but their contributions live on in the data they’ve shared with us to help further the understanding of this disease.  Jamie recently said it this way: “the desire is that this disease should no longer kill, but we do our best to help people live with it today.”

Thank you for living with it today and sharing those experiences with your fellow PALS, industry, researchers…all of us.  You are truly making a difference.

• Spring 2006: The ALS community launches!
• February 2007: PatientsLikeMe wins its first scientific award for a poster describing our work in ALS at the British Neuropsychiatry Association AGM in London, England.
• July 2007: Your contributions lead to PatientsLikeMe’s first scientific discovery. PatientsLikeMe publishes a paper in Acta Psychiatica Scandinavica showing that some PALS experience uncontrollable bouts of excessive yawning; an unusual symptom twice as common in the bulbar-onset form of the disease compared to those with a limb-onset.
• December 2007: Your sharing of real-world experiences helps PatientsLikeMe make a big splash at the International ALS/MND Symposium in Toronto, Canada. The team gives its first platform presentation to show off the website, and your health data, to ALS researchers, scientists, and clinicians.
• February 2008: An Italian study finds that the drug lithium carbonate slows the progression of ALS. Many of our PALS begin taking the drug, and so with your help, PatientsLikeMe embarks on our own observational study of the drug by launching a novel tool on the site.
• May 2008: Your voice in research is heard loud and clear.  PatientsLikeMe publishes its first survey in the European Journal of Neurology, showing that while 90% of PALS were warned about physical symptoms of their condition, only 10% were warned about possible psychological consequences, and two-thirds wanted to be told.
• November 2008: PatientsLikeMe’s Paul Wicks and Jamie Heywood once again attend the International ALS/MND Symposium to give an overview of the history of ALS online, and present our very first findings from the lithium study. Even though we were only presenting preliminary data, there was a lot of buzz about this new and interesting approach to conducting research - with you, the patient, in the driver’s seat. We also gave a few sneak-peeks at upcoming features for the site.
• December 2008: PatientsLikeMe and some of our fellow PALS are spotlighted in  two major media stories (CBS Evening News with Katie Couric and BusinessWeek) helping to raise awareness about ALS.
• April 2009: Following the discovery of another gene for ALS in February, PatientsLikeMe adds the ability for patients to enter and use their own genetic test results to find other patients like them with our genetic search feature.
• May 2009: In response to a request from one of our patients, Cathy Wolf, the PatientsLikeMe research team carried out a study to extend the scale, something we call the ALSFRS-EX (Extension), which helps capture functional changes in patients with advanced ALS.
• August 2009: Thanks to you, PatientsLikeMe now has the largest dataset of patients with Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) online than ever recorded before. We shared this data back to the community through an upgrade to our ALS charts.
• October 2009: The ALS community and all that you’ve shared is the focal point of Co-founder Jamie Heywood’s powerful talk at TEDMED, called “The Big Idea my Brother Inspired.”  In the presentation, he describes the creation of the site, preliminary results of the lithium experiment and shows some of our most advanced tools still in development.
• December 2009: The power of sharing your health data is highlighted in the PatientsLikeMe presentation at the 20th International ALS/MND Symposium in Berlin where the PatientsLikeMe research team unveiled our next round of analyses on the lithium study.  The team also presents preliminary results of our genetics tool, and a commercial project exploring emotional lability in ALS, undertaken with our partners Avanir Pharmaecuticals  (see “how we make money“).
• January 2010: PatientsLikeMe rolls out new profile charts in the ALS community to help you, the patient, understand your own profile better and tell your story more effectively.
• April 2010: PALS continue to team up to raise awareness and money for ALS research online and off.  This video highlights your participation in the PatientsLikeMeinMotion(TM) program.
• May 2010: This month we see the release of a study carried out in collaboration with our partners at the NEALS Consortium investigating some of the barriers to research participation that some of you may experience.  Additionally, all your contributions to the lithium study have been collected and analyzed by now, and the PatientsLikeMe research team submits it for peer-review publication to a leading journal.  Thanks to you and your peers, this final paper highlights the potential of new ways of collecting and analyzing data in ALS to advance clinical trials and find faster cures.
• May 2011: Just imagine…

The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare.  You may have heard about our executives at industry conferences, government hearings, or even on TV.  Highlights below.

Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences.

Earlier in March, we launched our PatientsLikeMeOnCall^TM podcast series to bring to you our leaders’ perspectives on topics that impact you, the patient, and the healthcare industry as a whole.  We kicked off the series with Ben’s interview regarding Fast Company recognition.  You can check out that one and the rest of our podcasts on iTunes or click on the links below to start listening to a specific interview.  As podcast host Aaron Fleishman says, “thanks for stopping by and listening and we’ll talk to you next time.”

• Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis
• Listen | David S. Williams III (Chief Marketing Officer) shares industry best practices in using social media for clinical trial recruitment (recently presented at the CHI SCOPE conference)
• Listen | Paul Wicks Ph.D. (R&D Director) discusses nexus of personalized medicine and information technology (highlights from his presentation given at a Personalized Conference event by ASU, Mayo Clinic, AAAS, FDLI)
• Listen | Jamie Heywood (Co-founder, Chairman) visits “on call” to talk about the impact of real-world experience on drug safety
• Listen | Sally Okun RN (Health Data Integrity Manager) gives her perspective on improving patient engagement and fostering patient-provider partnerships through tools like the Doctor Visit Sheet (highlights from her presentation at the Patient E-Centered Health event by The Stevens Institute of Technology)
• Watch | Maureen Oakes (Product Manager) shows you cool new website functionalities making their debut with the new transplants community
• Watch | Paul Wicks Ph.D. (R&D Director) talks about the value of patients measuring quality of life through online patient-reported outcome

Recognized by Fast Company as two of the 50 Most Innovative Companies in the World, PatientsLikeMe and Novartis have united to launch a new community for organ transplant recipients (including kidney, lung, heart and liver).  In the news release announcement, PatientsLikeMe President Ben Heywood and Novartis CEO Joe Jimenez discuss what impact this community could have for organ recipients.  Ben also discusses the community in more detail as part of our PatientsLikeMeOnCall^TM podcast series.  Listen in to learn more about our new programs PatientsLikeMeMentors^TM and PatientsLikeMeInMotion^TM.

It’s been an exciting few months for PatientsLikeMe.  Here’s a quick recap…

Today, Fast Company released its annual  ranking of the 50 Most Innovative Companies in the World.  PatientsLikeMe made #23 on the list alongside big league companies like Facebook, Disney, Novartis and Amazon.  PatientsLikeMe was also named the second most innovative company in healthcare, behind powerhouse General Electric (GE).  Read our news release about it here and the magazine article featuring one of our MS patients. To commemorate this honor, we’ve interviewed our President and Co-founder, Ben Heywood, in our first-ever PatientsLikeMe podcast (hosted by our own Aaron Fleishman).  Listen in!

Speaking of innovation, what do Bill Gates, Al Gore, Steven Hawking, Goldie Hawn, David Blaine and PatientsLikeMe Co-founder Jamie Heywood have in common? All of these innovators have graced the stage at a TED event. A nonprofit that brings together innovative people from “Technology, Entertainment and Design,” TED’s mission is to simply spread ideas.  Isn’t that another way of saying “share?”  We do love that concept.  Here’s Jamie at TEDMED (the healthcare-focused TED event) sharing our vision on the future of medicine in his presentation, “The Big Idea My Brother Inspired.”

Finally, we’d like to give a shout out to some of people who have interviewed us since the start of 2010.  In the February 8th issue of TIME magazine (“Group Therapy”), reporter Bonnie Rochman caught up with Jamie to get his perspective on the power of online patient communities. Later that same week, Ben Heywood sat down with Staci and Steve from WAAM’s My Great Kid Radio show to discuss sharing, openness and the remarkable power of technology.   He also spoke with Ryan McBride from Xconomy about the growth of PatientsLikeMe as a business, so be sure to check it out.  Lastly, we just posted a blog interview with reporter and author Thomas Goetz regarding his newly released book, “The Decision Tree” (featuring PatientsLikeMe and our community members).

Stay tuned for more 2010 interviews, announcements, and podcasts right here on our blog.

In March 2008, a story by Thomas Goetz appeared in the New York Times magazine about PatientsLikeMe (”Practicing Patients”). Thomas has now expanded on that reporting with a new book, The Decision Tree, that explores how new tools like PatientsLikeMe can help individuals engage in their health and make better, more informed choices. We asked Thomas some questions about his book.

	(PatientsLikeMe) What inspiration did you take from PatientsLikeMe? What did you want to say in a book that you didn’t say in the magazine story?
	(Goetz) When I wrote the story two years ago, PatientsLikeMe was a much smaller community - just 7,000 members, compared to more than 50,000 today. But it was already clearly a phenomenon: the members were engaged in their health in unprecedented ways. In reporting the story, I realized that what’s going on at PatientsLikeMe is part of a larger phenomenon: new technologies like the Internet that let individuals use their health data. At PatientsLikeMe, this is happening among people with particular health concerns, from ALS to mood. But the same ideas are spreading to preventive health and diagnostic health, and my book is an attempt to capture the entire phenomenon and opportunity here.
	(PatientsLikeMe) Are PatientsLikeMe members unique? Do you have to be an information junkie to delve into your health data, or is this something that anybody can engage in?
	(Goetz) I spoke to several PatientsLikeMe members for my story and even more for my book. They are literally on the first page and all the way through to the last chapter. For a writer, PatientsLikeMe members are exemplary patients - engaged, articulate, and passionate about PatientsLikeMe. And yes, PatientsLikeMe members are unique, insofar as they are on the vanguard of healthcare. They have tapped into something that the rest of the U.S. and the world is just realizing: that it can be incredibly powerful and healthful to get granular with our health information and - even more importantly - to share that information with others, to use it to build new insights. But they’re not unique, I don’t think, in the sense of being all that different from the rest of us. I think they’ve hit on something that can work for vastly larger population. More people need ways to engage with their health data and to turn it into inspiration.
	(PatientsLikeMe) What do you hope comes out of the book? Who do you hope reads it?
	(Goetz) At this point, I’ve spent several years talking to people who have heard the gospel of engaged patients and collective wisdom. PatientsLikeMe and the other companies in the book have created something remarkable - ways to get people involved in their health - and to those in-the-know, it starts to seem like common sense. Of course giving people a way to engage in and share their data is a road to better health!But in truth, this is still very much the exception in the healthcare world. The rest of the world hasn’t heard the good word - they are still in the old paradigm where the patient is something to fix rather than someone to engage. My hope is that, just as PatientsLikeMe has spread from a mere 7,000 members to the 50,000 today, so the broader message of patient engagement is a contagious, even viral, philosophy. I truly believe that the message in the book - that when people have a way to engage in their health, they can have better health - is something that can truly improve the lives of many, many people.
	(PatientsLikeMe) Can you share something you learned in writing the book?
	(Goetz) Among the many things that I hope PatientsLikeMe members would enjoy learning about in the book, one thing stands out: the story of the Health Seekers. It turns out that in 19th century America, an important part of the pioneering westward expansion was driven by patients - specifically people with tuberculosis, seeking better health. These health seekers were exceptional, especially at the time, because they broke away from the way they were told to deal with their disease, which was basically to do as little as possible and waste away. The Health Seekers rejected this idea and decided that they would not only take charge of their health, but that they would forge a new direction for the country. In many ways, I see the Health Seekers as the ancestors of the PatientsLikeMe community - people who are taking charge of their health and building something new. And in the case of PatientsLikeMe, they are building something that will help thousands of others, something that gets more powerful with every new contribution and entry.I’m proud to have PatientsLikeMe in my book, and I’m incredibly grateful to the PatientsLikeMe members who agreed to share their story not just with their PatientsLikeMe brethren but with the general public. My hope is that their stories will help lead other people to better health.
	(PatientsLikeMe) It’s our hope too.  Thanks Thomas! Thomas Goetz’s book The Decision Tree is available for purchase at Amazon.com here.

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

PatientsLikeMe made the following announcement last night at the TEDMED conference.  For more on Jamie Heywood’s presentation, check out what people are saying on Twitter.

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PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROME
Researchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus

Cambridge, MA–October 30, 2009–PatientsLikeMe (www.patientslikeme.com), the leading online community for people with life-changing conditions, announces the expansion of its fibromyalgia community to welcome patients with chronic fatigue syndrome (CFS), also know as myalgic encephalomyelitis (ME). By sharing information about their experience with CFS, patients can now find others just like them, including other patients who may have the newly discovered xenotropic murine leukemia virus-related virus (XMRV). The purpose of this expansion is for PatientsLikeMe to research the impact XMRV has on CFS patients.

“With 1 million patients diagnosed with CFS, and potentially 10 million Americans who could be infected with the XMRV virus, there is an unique opportunity to use the power of our open medical network to understand this illness and accelerate the validation and development of new biomarkers and treatments,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe.

There are currently more than 7,000 patients, many who have CFS, in the PatientsLikeMe fibromyalgia community sharing meaningful data for researchers to analyze about the condition. As part of this expansion, the PatientsLikeMe platform will allow patients who test positive for XMRV to indicate that on their profiles, much how ALS and Parkinson’s patients can now add their genetic information.

Adds David S. Williams III, head of business development at PatientsLikeMe, “This discovery may spur research into the efficacy of anti-retrovirals for patients with CFS, which could have a dramatic impact on the $10 billion market for these medications.”

Heywood will announce the new CFS community on stage at the health technology conference TEDMED in San Diego, CA today. CFS marks the 17th condition available to patients on PatientsLikeMe, which now boasts more than 45,000 patients sharing health data on treatments, symptoms and outcomes. The company’s next community for people with epilepsy is scheduled to launch in early 2010. More about PatientsLikeMe partnerships can be found on its partner site: http://partners.patientslikeme.com.

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