The holidays are a time for thinking about everything you hope and wish for in the coming year.  They’re also a time for appreciating everything you already have.  As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team.

“I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” – Ben Heywood, President and Co-Founder

“I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director

“I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of Business Development

“My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer

“All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder

Happy Holidays!

“You’re the patient who’s taking the medication. But industry can act almost like a friend who’s walking with you. And that relationship has never been the case in healthcare. Never.” – David S. Williams III

Last week, we kicked off our latest video series with an interview with President and Co-Founder Ben Heywood about the “long road” we’re all on together to change the way healthcare works for patients like you.

This week, Chief Marketing Officer and Head of Business Development David S. Williams III offers his perspective on how our industry partners can take part in this collaborative journey. Listen in to hear his thoughts on a new type of patient-industry relationship that is now possible thanks to social media.

Curious what other parties will share this “road” with us? Stay tuned for next week’s video interview with another member of the PatientsLikeMe executive team.

PatientsLikeMeOnCall™  is proud to present a new podcast series called “A Look Ahead.”  Through these dynamic podcasts, we will be diving into the major shifts PatientsLikeMe sees ahead for patients, patient care and patient/industry collaboration.

At the end of 2010, PatientsLikeMeOnCall released an episode called “The Patient Rules.” In this group podcast, we sat down with Co-Founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III and R&D Director Paul Wicks PhD to discuss how far patients like you have come in sharing health information and driving the healthcare process.

In this new four-part series, we will again be talking to each of them about the future of the healthcare industry. What changes are ahead in 2011? And what role will you play? To get you geared up for this series, here is a quick preview clip from my interview with David Williams about the importance of patients and industry working together.

The series premiere for “A Look Ahead” launches this Friday, March 18, 2011, with an interview with Paul Wicks. Look for the other interviews to run every Friday for the next three weeks.  To tune in, subscribe to the series on our iTunes page or listen to any of our podcasts on our PodBean page.

A few weeks ago, I gave a 30-minute talk about PatientsLikeMe at Bil:Pil, the unconference following TEDMED in San Diego (where Jamie Heywood made an amazing presentation, by the way). The topic of my presentation was “A Healthy Mix with an Economic Twist.” I focused on how difficult it can be to make money in the Health 2.0 space because companies must balance patient needs with commercial reality to keep the doors open.

Central to that discussion for PatientsLikeMe are our core values. As I’ve discussed many times before, it is our imperative to keep patients first in all of our endeavors, including building the revenue base for the company, because we must honor the trust patients give us in sharing their deep health information.

There was a mini-flurry of Twitter activity during the talk as well. Check out some of the thoughts from leaders in the space to the right.

What do you think? Video from Bil:Pil will be available in the coming weeks. Kudos to Jonathan Sheffi and team for organizing a great unconference!

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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PatientsLikeMe’s David S. Williams sits down with well-known blogger, triathlete and fibromyalgia patient, Minnie Lee.   Lee, an early member of our new fibromylagia community which launched this week, has a public profile on the site.

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	(David) When were you diagnosed with fibromyalgia and when were your first symptoms?
	(Minnie) I was diagnosed in late 2002.  However, my first symptoms started as early as 1998, and then became more prevalent and frequent in late 2000.
	(David) How has fibromyalgia changed your life?
	(Minnie) On its onset, the changes were negative.   I couldn’t engage in my usual social activities and I was getting sick more often than I was used to.  It was a shock to me, having always been such a healthy person all my life.  I limited myself even further using my “strangely named illness” as a crutch, which led me to be even more dormant.  That was early on.However, in the past 2-3 years, I have to say that fibromyalgia changed my life for the better.  It has given me purpose in life – to improve my own life and help others improve theirs by example of exercise, healthy eating and proper treatments.That said, while I still manage a fairly active and busy lifestyle– from having a full-time job to training for triathlons– I did have to make certain adjustments in my life to make sure I can work within my limitations.  First of all, I had to make the huge adjustment mentally to be ok with admitting that there are just certain things I can’t do.  For a type A person like me, it was one of the most difficult things I had to change (and it took a while).  I limit the number of errands I run in a day, even if I have a much longer list of things to do.  I spread them out over several days – which requires planning some things ahead.  To ensure I get good sleep (in both quality and quantity) to accommodate my training regimen, I make choices every day that make sleep and rest a priority.  If this means limiting my social engagements and having to cancel certain commitments, so be it.  I also had to make a mental shift at work to not get as affected by stressful situations, which has helped me greatly.
	(David) What motivates you to train for triathlons and half-marathons?
	(Minnie) There are three major factors that motivate me. First and foremost, this was my promise with God – to turn this negative situation around into a positive one.  I made a promise to swim, bike and run to not only help myself but to help others find hope in their every day lives.  Secondly, it is my fellow patients that motivate me to get up and moving.  I know there are people out there whose conditions have gotten so bad that they cannot engage in any kind of exercise.  I can’t imagine the pain and suffering they go through, and I want to dedicate my races to them, while giving hope to others that anything is possible.  I know that these endurance races are a rather extreme measure to promote the benefits of exercise, but I think by doing something extreme I can make a better point about what we’re capable of.  (If I can do a triathlon/half-marathon, you can definitely go for a walk and see how you feel!)  Lastly, my motivation is my own past.  Four to five years ago I was drowning in self-pity, dependent on muscle relaxants and pain killers, spending a lot of my leisure time in bed, and was frequently missing work enough to make me feel concerned about keeping my job.  They were some of the darkest days of my life.  Now, all I have to do is remember those days to get myself moving on a tough day.
	(David) How do you see PatientsLikeMe helping the fibromyalgia community?
	(Minnie) Launching a community site for fibromyalgia on PatientsLikeMe has significant meaning.  First of all, it adds to the recent recognition the illness has been gaining in the medical community.  It is time for any discussion of this illness being real or not to be over and done with.  Secondly, and more importantly, it has massive potential of being a crucial resource for patients that lack information and options about their conditions, by having every possible symptom and treatments laid out in one central source.  Additionally, patients can and will find friends that understand what they go through (and we don’t have many of those, because fibromyalgia is still a foreign language to many people).  Another amazing possibility is that this can be a great source for doctors, because knowledge and understanding of fibromyalgia among doctors can always be improved.  This can be the perfect linkage between patients, their support system and health care professionals.  I can’t help but be so enthused and excited about this endeavor PatientsLikeMe has set forth.  They are bringing such a helpful platform of information and communication to the fibromyalgia community.  Thanks!!!!

Welcome to the PatientsLikeMe blog. Here you will get firsthand accounts of our growth and how we are impacting global health care. Why have we chose the name “The Value of Openness”? Read our Openness Philosophy below, and you’ll see why.

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Openness is a good thing.

Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept.

You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.

PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.

Will you add to our collective knowledge… and help change the course of healthcare?

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Thoughts? Comments? We’re always eager to engage in conversation regarding openness of health data.

Thanks, and welcome to “The Value of Openness”.