The Value of Openness: The PatientsLikeMe Blog

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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Check out the October issue of WIRED magazine!  PatientsLikeMe makes “The Smart List:  12 Shocking Ideas That Will Change the World.”  In an interview with Brendan Koerner (”Forget Medical Privacy“), Co-founder Jamie Heywood talks about how “the lack of openness [in medicine] is making us sicker” and how sharing individual health data can benefit you.  What do you think?

Earlier this month, Jamie also gave a rapid fire presentation on the future of medicine at the 2009 Gov 2.0 Summit.  He addresses how we can better answer this question for patients:  “Given my status, what is the best outcome I can achieve and how do I get there?”  Here’s how (with openness leading the way):

Ben Heywood is speaking at The National Summit in Detroit today, and was invited on Fox Business Live to talk about the patient influence on the future of health care.  Here is the segment with anchor Alexis Glick.

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.

It’s exciting times for PatientsLikeMe!

Today, our new community for people with fibromyalgia goes live on our site.  Spread the word!  Let’s bring a new level of understanding to this disease in a way that nobody else can.  Next week: a blog series regarding this new community and the people in it.

If you haven’t checked out the most recent issue of BusinessWeek yet, you’re in for a treat. Senior writer Catherine Arnst takes an in-depth look at how PatientsLikeMe is “changing the nature of drug research and the practice of medicine” in her article -  “Health 2.0:  Patients As Partners.”

Finally, turn your channel to CBS Evening News with Katie Couric tonight to see PatientsLikeMe featured in a segment with medical correspondent Dr. Sanjay Gupta.  Part of a week-long series about patients finding medical information online, our piece will include interviews with a patient member, as well as our founders.

We have lots happening, and lots more to come!  Stay tuned…literally.

Last Friday (September 26, 2008), our Co-founder and President, Ben Heywood, was honored at the Boston Business Journal “Champions in Healthcare” award ceremony. Ben was one of two recipients recognized in the Innovation category. These regional awards highlight outstanding individuals and companies from the Boston-area who are making a difference in healthcare, including winners across five categories (Administrators, Community Outreach, Employers, Innovators, Nursing and Physicians).  Here is the full list of honorees.

Held at the Charles Hotel in Cambridge, the event was kicked off with a keynote address by Harvard Medical School’s Dr. Leonard Zon, an internationally recognized pioneer in the fields of stem cell biology and cancer genetics.  Next, Boston Business Journal’s Editor, George Donnelly, and Lisa Vanderpool presented each honoree with an engraved, crystal award in front of a room full of colleagues, family members and friends.  The winners were also profiled in a special edition of the paper last month (August 15, 2008).

It’s truly an honor for our company to be spotlighted in this way, particularly in our own “backyard,” which happens to be populated with some of the best and brightest healthcare professionals and companies around.  In his thank-you remarks, Ben touched upon his personal experiences that has brought him here, and thanked his team and the community.  He said it best -  “I share this award with the other two co-founders, my brother Jamie and our friend Jeff Cole, and our incredible team…Last but not least, I have to thank the patients.  Without them, we wouldn’t be here.”

Mimi Yin over at The Common Data Project blog posed some interesting questions about data in our communities:

Back in April, I wrote about the site PatientsLikeMe.com, which provides a wonderful new service that allows individual users to share the most intimate details of their medical conditions and treatments, which in turn creates a pool of invaluable information that is publicly available. However, I also wonder about how their data may be skewed because their users are limited to the pool of people who are comfortable sharing their HIV status and publicly charting their daily bowel movements. The question we have for PatientsLikeMe is: Who isn’t being represented in your data set? And how does that affect the relevance of your data to the average person who comes to your site looking for information? Who won’t find your data helpful because it’s not relevant to their personal situation?

First of all, Mimi brings up outstanding questions.  Let’s take the overall philosophy first, openness.  PatientsLikeMe is built around the idea that patients can drive their own health outcomes through sharing their health information.  This is a movement away from privacy as a paradigm for health management.  That being the case, the people who choose to be members have weighed the potential benefits and risks of sharing information and land on the benefits side.

PatientsLikeMe is certainly not for everyone.  As the early-adopters have been called the “vanguard” by Thomas Goetz in our recent New York Times Magazine article entitled Practicing Patients, these people are joining a movement to move the control of patient data back to the hands of patients and not the other stakeholders.  So it’s these people who have chosen to share their information with each other, with about 10% choosing to share with the world for everyone’s benefit.

The time is now for patients to take control and embrace this openness philosophy.

Now, to address those issues individually:

• How representative is our dataset? This varies by each community according to the size of our sample and the characteristics of the “typical patient” with that disease. For instance, our flagship ALS community contains over 1,400 registered patients, accounting for about 5% of the US population of 30,000 patients. Our community’s mean age at onset is 49 years old, relative to the population norm which is 54 years old, suggesting we get slightly younger users on the site; we also tend to have a higher proportion of longer survivors than one would find in the broader population. The larger the PatientsLikeMe community and the smaller the patient population, the more representative we are.

• How does that affect the average person who comes to your site looking for information? Not much! When you join PatientsLikeMe, we don’t show you the experience of the average patient. We show you the outcomes of a patient just like you. Through our advanced search feature you can find other patients who are similar to you demographically, geographically, or in terms of your illness profile.

• Who won’t find your data helpful because it’s not relevant to their personal situation? We believe that more data is always better; if that data is from someone who’s not quite like you, we show you the ways you differ. That way you can make your own adjustments and draw your own conclusions. At some point though it stops being about the availability of data and starts being about the ability of the user to act; our treatment database in HIV is of little use to someone without access to antiretroviral drugs. That said, the tools we provide can still help a patient through social support, sharing their outcomes with others who have been in the same position, and record their blood counts (if available).

Our favourite part of Mimi’s post states:

To state my case more strongly: Participating as a data point in data-driven research is a passive form of voting, the most basic of rights in a functioning democracy.

We’d even go one further and say that sharing important data about decisions you’ve made in order empower others is actually more important than casting your vote in a democracy; it’s more meaningful, you immediately gain experience and insight right back, and perhaps somewhat idealistically, it brings people together rather than driving them apart. Part of our mission is to make the case that sharing data works out better for everyone; the more people we convince, the more reliable our data will be, the better decisions people can make, the more people will be convinced to share their data…The movement begins….

PatientsLikeMe is proud to announce that team geneticist Catherine Brownstein, Ph.D. will receive the 2008 Young Investigator Award from the American Society for Bone and Mineral Research (ASBMR). The award, given for Dr. Brownstein’s post-graduate creation and study of the Klotho/HYP double knockout mouse, which further elucidates the genes responsible for bone density and phosphate metabolism, will be conferred this September at the ASBMR Annual Meeting in Montréal, Canada.

“I’m honored and excited to receive such a prestigious award,” says Dr. Brownstein. “The ASBMR is a fantastic organization with many brilliant experimental and clinical scientists. I look forward to the meeting in September.”

Dr. Brownstein recently joined the PatientsLikeMe Research & Development team to ready its platform for the incorporation of genetic and biomarker information. PatientsLikeMe’s unique platform gives patients with life-changing illnesses sophisticated personalized outcome tools that previously were only available to clinical research centers like Yale where Dr. Brownstein completed her award winning work. The open data model of PatientsLikeMe and the thousands of active patients provide a unique new opportunity to do collaborative disease discovery and help improve patients’ lives. Dr. Brownstein will be responsible for defining and building the data structures that allow patients, for the first time, to actively participate in disease discovery as well as treatment.

Dr. Brownstein joins an internationally recognized research group including: Paul Wicks, Ph.D., an expert in psychological aspects of neurodegenerative conditions; behavior informaticist Jeana Frost, Ph.D. and social-statistician Michael Massagli, Ph.D., whose recent joint paper on “Social Uses of Personal Health Information Within PatientsLikeMe” is in the peer-reviewed Journal of Medical Internet Research; and Sally Okun, RN, an industry veteran focused on health data integrity for PatientsLikeMe communities. The team is led by James Heywood, co-founder of PatientsLikeMe, and renowned expert on Amyotrophic Lateral Sclerosis (ALS).

“Catherine has received a great honor with this award. Yet, we know her work is just beginning,” says Heywood. “Giving patients the power to discover and use genetic information to support discovery and improve care will change the landscape of medicine as we know it.”

In one of the greatest honors in our young company to date, PatientsLikeMe was featured in today’s New York Times Magazine. The article, entitled Practicing Patients, appropriately discusses the pros and cons associated with sharing data-rich personal health information in an open community.

PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.

With amazing patient successes balanced by medical leaders’ skepticism, author Thomas Goetz strikes a critical chord within the current healthcare debate. Is the American health system broken? Can patients fix it through aggregation of collective experience? Are patients to be trusted to report their own health conditions? What does PatientsLikeMe mean for the medical establishment?

PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers — they may be the vanguard of how we all will care and treat our résumé of chronic diseases.

The article cites the PatientsLikeMe Openness Philosophy; the manifesto that draws our company line in the sand. Openness can lead to better outcomes and accelerate research like never before. This is our goal for PatientsLikeMe. This isn’t health science fiction. It’s happening today with the help of thousands of patients.

So read the article–and join PatientsLikeMe–to see where you stand.

PatientsLikeMe is proud to be at the forefront of the Health 2.0 movement. What’s Health 2.0 you ask? It’s all about revolutionizing healthcare through new, web-based tools, search functionality and communities. As a result, patients are able to communicate and exchange information in ways they never could before.

No wonder Matthew Holt and Indu Subaiya, organizers of the annual Health 2.0 Conference, list PatientsLikeMe as one of the five most exciting Health 2.0 companies. In a recent interview for the eDrugSearch.com Blog, Matthew said, “[PatientsLikeMe is] the best example of a combination of a really useful community and tools making a significant difference in the lives of people with serious debilitating diseases. You can literally drill down and see people in exactly your situation, on your drugs, and see what did or did not work for them.”

We’re delighted by this recognition, which only bolsters our determination to open the healthcare system further. We know the powerful benefits of sharing treatment and outcome experiences - and pretty soon, the healthcare industry will too!

Bringing the New Year in right, Benjamin Heywood, CEO of PatientsLikeMe, was interviewed by David E. Williams, publisher of the Health Business Blog (not to be confused with David S. Williams who works with PatientsLikeMe). In the interview, Ben discusses the future of the company, its ground-breaking Openness Philosophy, and the differentiation of PatientsLikeMe versus other Health 2.0 companies.

Here’s how David E. Williams characterized PatientsLikeMe:

PatientsLikeMe is one of my favorite Health 2.0, social networking websites. The online community enables patients with serious illnesses to build content-rich connections to similar patients. Patients are motivated to provide all the relevant information about themselves and to stick with the site over time to help one another. As a consequence, PatientsLikeMe users collectively generate robust data sets that have the potential to generate meaningful insights for researchers and commercial entities. That leads to some interesting business opportunities for the company.

The interview provides great insight about PatientsLikeMe. Enjoy!

The buzz about PatientsLikeMe is growing! In August, Business 2.0 magazine and CNN.com recognized PatientsLikeMe as one of 15 companies that will change the world. To be selected, a company must have “the potential to rewrite the rules of existing industries or open up entirely new markets.”

We couldn’t agree with this assessment more; after all, we began with that exact mission. But what’s amazing is that we’re already starting to achieve it. Thanks to the participation of thousands of patients like you, we’re well on our way to creating “a fast bypass around restrictive privacy rules that tie scientists in red tape.”

As part of the implementation of this sweeping objective, we’re pleased to announce the upcoming launch of our HIV community, which we feel is an important addition to our coverage of life-changing diseases. If you know anyone affected by HIV, please send them an invitation to join PatientsLikeMe.

PatientsLikeMe, the leading treatment and outcome sharing website for people with life-changing conditions, has been recognized by Business 2.0 and CNN Money.com as one of their 2007 “Next Disruptors: 15 Companies That Will Change The World“.

“We are honored to receive this recognition. However, we know we still have much to do in order to achieve our mission of helping patients learn from shared real-world outcomes so we can all contribute to finding the best treatment options,” explains co-founder and CEO, Benjamin Heywood.

PatientsLikeMe has taken an extraordinary position regarding patient data believing that openness and sharing, rather than strict privacy, is the best way for people to take control of their health care, improve outcomes, and accelerate research. The company has its Openness Philosophy posted on its website for anyone to view.

PatientsLikeMe also shares aggregated data from its members in order to share data with the world, recently announcing their data repository in ALS, Multiple Sclerosis and Parkinson’s.