The Value of Openness: The PatientsLikeMe Blog

Every so often, we sit down to try and make our business objectives clearer to our patient communities.  Why?  Well, we can’t have a business without you and our communities can’t exist to help patients without a business.

This often results in our Privacy Policy and User Agreement being updated to help clarify our goals and objectives.  One of our company’s core values is transparency, which means we never want to surprise you.  Our site wouldn’t be what it is today if we didn’t honor the trust you put in us.  Because of that trust and our values, we want you to understand what our Privacy Policy means for you and make sure it clearly states what we’re doing with your information as a business.

So, what has changed about our Privacy Policy?  Well, the short answer is not much - but if you haven’t read it in a while, it will read differently (and hopefully much clearer).  As you know, we talk very openly about how we encourage our paying customers to partner with our patients (check out our Read This! section) to better serve your needs. The latest changes to the Privacy Policy reflect what we have always intended to do as a business, which we’ve hopefully expressed to you.  In this latest revision, we try to make it clearer by providing examples of what different parts of the policy means.  We give specific examples of real world cases of where and when your data is used and/or sold.

For example, over the last year we have expanded our efforts into understanding drug safety in the real world.  This started with the Treatment Evaluations - letting you tell us (and our customers) what is good and what is bad about the treatments you are taking.  Next, we piloted (in our MS community) the ability to voluntarily report adverse events directly to the FDA through PatientsLikeMe.  Lastly, in conjunction with UCB, we are expanding our efforts to measure drug safety in the Epilepsy community.  All of these initiatives are building to a better understanding of how treatments work in the real world - one of our goals here at PatientsLikeMe.

As we’ve said through our site from the start - you control your information and you “may enter as much or as little information as they like.” We just added “and should not enter any information they feel uncomfortable sharing.”  This is common sense on any website, but for new members we wanted to make it clearer.   The bottom line - the more you share about your real identity online (whether its on PatientsLikeMe or other Internet sites), the better the chance that someone could identify you.

If you haven’t see our Read This! section, please do.  It’ll help give you a sense of what we believe the risks and benefits are to sharing information.  Openness is at the core of who we are as a company (see our Openness Philosophy).  Your openness is improving patients’ lives, accelerating research and helping improve medical care.   Thank you for that.  If you have any questions or comments, you know where to find us!

One thing that’s great about working at PatientsLikeMe is that our members are really invested in making our product better. Every day, we receive lots of great recommendations about how to improve the site.   Today, we’re unveiling newly redesigned treatment reports that incorporate feedback we’ve received in all our communities.  Want to know what medications patients like you are using to treat their condition and compare your experiences with others?  That’s what you can do with a treatment report.   In redesigning these reports, we wanted to make them more useful, more visible and easier to navigate.  Now you can:

• Understand the experience of taking a treatment, including what the side-effects are and how people manage those side-effects
• Learn how to cope with taking a drug (with tips and advice from other members and links to relevant forum threads)
• Find and contact other patients like you who use a certain treatment (such as people who report the same side effects or people who take it for the same reason)
• See how your experiences compare to those of other patients like you

If you’d like a tour of these new reports, check out the screencast below by our web developer Adam Darowski.  We’ll continue to update you through the forum, our newsletters and the blog on what’s new and improved on the site.  Your feedback helps us to continue to fulfill our promise of delivering a website that helps you and makes you say “wow.”  Please, keep it coming…

Earlier this Fall at Medicine 2.0, PatientsLikeMe was honored to receive the inaugural Journal of Medical Internet Research (JMIR) Award for our paper on what we can learn about drugs post market from patients reporting treatment experiences on PatientsLikeMe.

Once a drug is on the market, it can be difficult to evaluate how it’s working in the real world for different kinds of people using it for different purposes. In this paper, our research team examined how we can learn from collecting the experiences from individual members scattered around the world into a single database. The study focused on Amitriptyline, a medication used widely and for a variety of purposes, and reports on why patients take it, the efficacy of the drug, its side-effects and associated burden.

To see patients’ real world experiences with a specific treatment, like Amitriptyline, you can browse the thousands of treatment reports shared on PatientsLikeMe.  You can also view a summary of our Medicine 2.0 presentation here or below to learn more about this study.  The full paper will be published in 2010, so stay tuned!

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):

The media is abuzz at the moment with stories about social networks like Facebook and Twitter, carrying pieces on the good (Facebook Fan Page raises $10,000 for a Silicon Valley Food Bank), the bad (Facebook users are leaving out of mistrust and boredom), and the controversial (Social networking site for living organ donors). In the health domain, there is a fascinating ongoing debate about the interaction of pharmaceutical companies with the internet (John Mack’s Pharma Marketing Blog is the main hub of discussion), as well as the ways in which non-profits should be using innovative new tools. That was the focus of a workshop recently convened by the New England chapter of the Arthritis Foundation at the Equinox Hotel in Manchester, Vermont.

(l-r) PatientsLikeMe R&D Director Paul Wicks with Sue Nesci, Chief Public Health & Policy Officer of NE Arthritis Foundation and Vermont Governor Jim Douglas (keynote speaker)

PatientsLikeMe was invited to share our experiences of using the internet to empower patients, change perceptions in the medical field, and effect real change through shared information.  Here are some of the topics discussed:

We are looking forward to continuing the discussion to help patients benefit from new ways of doing things, while drawing upon the vast experience of those in the non-profit world who have been fighting for patients for many years.

We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient.

In June, we launched The Patient Voice report series with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members.  At the time of the report, 63% of patients on our site reported an efficacy of “moderate” or “major” for inpatient therapy.

Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan!

If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to say, so please share on.

Once again, special thanks to our summer intern, Shane, for his work on the video!

Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming.  That’s why PatientsLikeMe continues to get involved in the research process.  With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics and find others with the same genetics as them.  As part of our commitment to supporting genetics discovery, PatientsLikeMe recently partnered with 23andMe, aiding them in their research effort to get 10,000 Parkinson’s patients for a groundbreaking research study.

Most of the time, people don’t know what causes their Parkinson’s disease.  It could be due to genetic factors we haven’t identified yet, environmental exposures, or maybe even something else completely.  However, there are some known genetic causes of Parkinson’s disease. Sometimes different genetic mutations have different disease characteristics, so there’s some benefit to knowing what mutation you may have.  For example, different genetic mutations can result in an earlier or later onset for Parkinson’s disease, some have a milder or more severe disease course, and others have a higher or lower chance of dementia.  Knowing your genetic status could help you plan ahead, especially if you have a strong family history of the disease.

The 23andMe kit tests for one genetic mutation that can cause Parkinson’s disease - LRRK2 G2019S.  The chances of having this mutation vary with your ethnicity, and not everyone with the mutation will get Parkinson’s disease. However, some studies claim that LRRK2 G2019S is responsible for about 5-6% of all familial cases of Parkinson’s Disease and 1% of sporadic (randomly occurring) cases of Parkinson’s disease.

We are working to include as much meaningful genetics information in the PatientsLikeMe Parkinson’s community so that you can make the best decisions collaboratively. For those PatiensLikeMe Parkinson’s community members taking advantage of the 23andMe offer, we encourage you to upload your genetic information on your PatientsLikeMe profile so we can continue to expand our understanding of genetics and Parkinson’s in the context of individual patients.  If you go to your 23andMe account and find that you have the LRRK2 G2019S mutation, you can add it to your PatientsLikeMe diagnosis history.  Once you have entered your genetics to your profile, you will be “findable” by other “patients like you” with the same genetics. The PatientsLikeMe research team is excited about learning more about Parkinson’s with your help. Sharing information will help us all learn as much as we can about the disease.

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!)

Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA are different because PLS only affects the upper motor neurons, and PMA only affects the lower motor neurons. It’s an important distinction for patients to be told about because the prognosis is less severe in these conditions.  On average, survival in ALS is typically reported to be 2-5 years, whereas for patients with PMA it’s more like 5-10 years and for PLS it’s even longer (often several decades).

ALS itself is a rare condition, affecting some 30,000 people in the United States at any one time.  PLS and PMA each represent approximately 5% of the overall ALS community, so there’s approximately 1,500 patients with each condition in the U.S at any given time.  In April 2008, PatientsLikeMe added the ability for members of our ALS community to change their diagnosis to these rare conditions.  To date, we now have 182 patients with PLS and 270 with PMA. This is truly exciting because even the largest studies in the literature have only examined 40 or so PLS patients and a similar number of PMA patients. One of our most useful features on our site for people with ALS is the percentile curves, which we display as a backdrop on their profiles to put each individual’s rate of progression into context. However, as you can see in the figure below, when you compare the progression curves of ALS patients on our site with those of a typical PLS patient, the PLS patient progression deviates significantly from the ALS curves.

With so many PLS and PMA patients sharing such valuable information about their disease on PatientsLikeMe, we had enough information to generate a new set of percentile curves for each of those communities.  To do this, we used self-report ALSFRS-R (ALS functional rating score - revised) data from 104 PLS patients and 59 PMA patients that met our criteria for data quality. We have good data for the first 4-5 years of disease after onset, and after that point we rely on linear extrapolation to make the plots.  Here we see the value of openness in action.  When you see the potential value in contributing your data, it drives a virtuous cycle: the more data you enter, the more value you get, so you enter more data!

As any of our patients in these communities will tell you, being diagnosed with a rare disease can be a frustrating experience. Aside from dealing with the condition itself, there’s the lack of public awareness, a lack of research investigating your condition, and a sense that you are being “lumped in” with a similar disease because your community doesn’t have the critical mass to merit its own attention.  These new percentile curves for PLS and PMA patients demonstrate the value and power of openness.  By sharing their health data in an open fashion, patients are providing new insights that are changing how we think and act when it comes to these very rare conditions.

Note:  A potential limitation of these curves is that they represent the outcomes for patients that are members of PatientsLikeMe and may not be generalizable to the entire population; we are working hard to better understand and correct for the biases in our population and data. As the size and longevity of each community increases, we will be in a better position to address these issues.

There are rare diseases, and there are rare diseases. Here at PatientsLikeMe our first community was built for patients with ALS (estimated US Prevalence: 30,000), and in common with our other neurological communities there is a familiar list of challenges: low public awareness, little funding for research, and a lack of adequate treatments. However, over the past year or so I’ve really had my eyes opened to the differences between “rare” and what you might call “super-rare” conditions, such as Devic’s neuromyelitis optica. Nobody really knows how many people Devic’s affects as it is frequently confused with MS, but there are probably only a few thousand patients with this condition in the world. That’s why we’re incredibly proud that our Devic’s community currently has 136 registered patients sharing health data with one another; that’s more than 5 times larger than the largest study I’ve seen on the condition in the scientific literature (which included collaborators from around the world in seven specialist centers over the course of several years).

I was privileged to be invited to speak at the annual meeting of Eurordis (The European Organization for Rare Diseases) in Athens, Greece, to meet with some of the leading online health efforts in this space. Attendees included non-profit organizations, medical professionals, and patients themselves from all over Europe.  We all convened to discuss some of the most innovative tools available on the web for patients to find other patients like them, share their data, and improve their outcomes. PatientsLikeMe was featured as an ambitious and innovative effort to accelerate the pace of research in rare diseases but we also saw great initiatives that had come from the frontlines of rare diseases.  In fact, the point about ultra-rare diseases was driven home in the opening keynote by Yann Le Cam when we heard that there are some 5,500 rare diseases cataloged by Orphanet (including Devic’s) which are not in the ICD-10 taxonomy of diseases. Ultimately, at PatientsLikeMe, our goal is to build a community for every life-changing illness that exists, but what can patients with these conditions be looking for in the meantime?

The highlight of the meeting for me was seeing the incredible work being carried out at Duchenne Connect.org (The Netherlands) and Duchenne Connect.org (USA). Founders Elizabeth Vroom and Pat Furlong gave an overview of their experiences building patient-focused programs that allowed parents of children with Duchenne’s Muscular Dystrophy to support one another, accelerate the efforts of researchers, and bring greater attention and focus to patients affected by this rare disease. From the other side of the Atlantic, Mary Dunkle from NORD (National Organization for Rare Diseases) made a clear statement that online communities have the power to be far more than just bulletin boards and blogs for patients to use for emotional support. In her presentation, she stated: “We want to move beyond simply providing emotional support…to facilitate action that produces results”; we couldn’t agree more. Videos of the talks from these amazing patient advocates (along with many other talks from the meeting) can be viewed online here at the Eurordis website.

There were a number of challenges that were highlighted during the meeting. David Golub was the first to articulate that there are serious ethical issues implicit in for-profit companies (like us!) being involved in patient research that was traditionally the remit of academics and clinicians. He asked us to all consider what we can all do to “protect the public commons?”. Unsurprisingly for a European audience, there was much concern about language specialization.  Patient advocates insisted on better localization to allow broader access to non-English speakers, and for providers like us trying to find innovative ways to ensure excellent content that can be dynamic and accessible for all. My own view is that technology (like Google Translate) will outpace any system we could possibly resource with human translators.

Finally, there was the question put to us by event organizer Denis Costello from Eurordis; how can small non-profits in ultra-rare diseases partner with organizations like PatientsLikeMe?  It’s something we think about every day. Our Devic’s community came out of our MS Community; PSP and MSA came from Parkinson’s; and PLS and PMA came out of ALS. We are developing strategies to build communities for “clusters” of communities that will allow us help a broader swathe of patients with both prevalent and rare conditions. It was hugely encouraging to see the energy, ingenuity, and determination that you see when advocates are passionate about helping patients.

Last month, PatientsLikeMe announced our partnership with biopharma leader, UCB, to launch a new community for people with epilepsy.  Below is an interview with UCB’s Vice President of Clinical Research, Peter Verdru, MD.  David S. Williams III, head of PatientsLikeMe business development, recently spoke with Peter about the forthcoming epilepsy community, adverse event reporting, and the partnership in general.

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	(David) UCB is known as The Epilepsy Company.  What’s your goal in partnering with PatientsLikeMe to create a new community for people with epilepsy?
	(Peter) As patient-centric companies, UCB and PatientsLikeMe are both committed to advancing research and improving the lives of people with life-changing conditions.  UCB has a long-term commitment to the epilepsy community - so a partnership with an organization like PatientsLikeMe seemed only natural. Our goal with this partnership is to provide this community to patients with epilepsy to help them manage their disease. Additionally, the community will generate patient-reported outcomes that may help UCB better understand how patients live with epilepsy and help advance epilepsy care. We anticipate patient-reported outcomes data across treatment groups for seizure severity, number of seizures, symptoms, adverse events, health-related quality of life, and co-morbidities, among other things. Using this knowledge for our future clinical research programs would be a logical next step, leading to an even better understanding of what future treatments could offer or what type of patients would gain additional benefit.
	(David) This partnership is said to give patients a voice in advancing research.  How so?
	(Peter) This community will give patients the tools they need to measure their own outcomes. Participants will record their real-time, day-to-day progress in controlling their seizures and achieving their treatment goals, and share that with the community to help other patients, caregivers, researchers and industry learn more about the disease. Tracking their disease over the long-term may help patients and physicians work together to evaluate the impact of their treatment. Eventually, clinical research programs might also benefit from the long-term data these patients are sharing.
	(David) Through the partnership, both companies will be working to design and deploy a system that allows for adverse event reporting to the FDA.  Why?
	(Peter) UCB has an ethical and legal responsibility to report adverse events associated with our drugs. If adverse events for any UCB drugs are mentioned on the site, UCB is required to report these directly to the U.S. Food and Drug Administration (FDA). Therefore, we are working to develop and deploy a solution that will allow us to assess and process potential adverse events, report them to the FDA, and capture them in the UCB safety database.
	(David) What’s the most exciting part of this initiative for UCB?
	(Peter) We’re excited to be taking a leadership role in the pharmaceutical industry to create a community that will give patients a forum for showing their treatment outcomes. Patients are really the experts about how epilepsy impacts their lives. UCB is focused on bringing new treatments to patients with severe diseases like epilepsy. We sincerely believe this unique partnership will bring real value to the large community of patients, families and caregivers
	(David) Thanks Peter!

Today, more than 3,600 people with ALS are sharing their health data and experiences with patients like them.  Recently, we announced our new genetic search engine for ALS patients, designed to help members find others like them, right down to the molecular level.  With 10% of all newly diagnosed ALS patients joining PatientsLikeMe, there are more and more people sharing their health information, including genetic data, to help learn about this disease.

Our research team’s geneticist Dr. Catherine Brownstein recently interviewed Samperio, one of the first members to enter in his genetics on PatientsLikeMe. Later this year, Catherine will be presenting the genetic data shared on PatientsLikeMe to the leading doctors, researchers and thought leaders in the industry to help us all learn more about ALS, and the genes affecting the condition.

Here’s what Samperio had to say about life with familial ALS (FALS) and hope for the future.

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	(Catherine) Thanks for agreeing to the interview!  You recently joined PatientsLikeMe and revealed that you have a SOD1 genetic mutation, the cause of your familial ALS.  When did it all start and how has this form of ALS affected you and your family?
	(Samperio) My ALS is affecting my family [the same] as any other form of ALS. I stopped working, and my wife has to work for both of us. I never had the chance to play soccer or teach my 9-year old son to ride a bike, as I did with my previous sons. I lived the same ALS story with my mother.  She died when I was 18. It took her approximately 10 years, from beginning to end. My symptoms begin at age 40; my ankles were weak. So I was suspicious of ALS. A few years later, I had the DNA exam in Houston, TX and it came positive for FALS. My biggest hope is my family, especially my wife. I know what a burden I am, since I lived that experience with my mother.
	(Catherine) You previously mentioned that your doctor had never seen your genetic mutation before.  How much do you know about your SOD1?
	(Samperio) Almost nothing. The DNA exam was performed 6 years ago. The doctors never told me anything regarding my genetics. I have never met anyone with FALS.
	(Catherine) So now you’ve joined a site with people just like you — even people with the same genetic causes for ALS.  What has been your experience on PatientsLikeMe?
	(Samperio) By joining PLM, I have found so much comfort on all the daily interaction, reading all those people [with the same disease] who share the same interest as I do.
	(Catherine) What is your hope for the future of ALS research?
	(Samperio) As for the future of the ALS research, obviously to find a cure for this disease. I will give all [my] help to the ALS cause.
	(Catherine) Thanks again for sharing, Samperio!

Today - June 27, 2009 - is National HIV Testing Day.

AIDS.gov, the one-stop access to U.S. Government HIV/AIDS information and an organization PatientsLikeMe collaborates with to raise awareness of HIV, has been running a campaign all month to promote National HIV Testing Day.  As part of the campaign, AIDS.gov launched the “I Know. I Took the Test” blog series, featuring videos and stories of people talking about what taking an HIV test means to them. The series highlights several HIV testing story campaigns from organizations such as the National Association of People Living with AIDS , POZ , Southern AIDS Living Quilt , The Positive Project , and others.

In support of this campaign, PatientsLikeMe recently invited members of our HIV community to tell us in a few sentences about their experience and/or thoughts about HIV testing.  Here’s what they had to say:

“I think it is probably the single most important thing a person can do for him/herself. The test will show if a person is infected, important knowledge no matter how it turns out.”

“Getting tested for HIV is so important. The knowledge of knowing can make a difference as to how you will live your journey in life.”

“Being tested for me caused me to change my outlook on sex, changed my life in such a way that gives me a opportunity to speak on the importance of being tested , and to share information about treatment, and that there is a life after testing takes place.  If we ever what to see an end to this very serious problem across the world we must continue to speak and encourage testing  in all walks of life.  Moot for me I think not, important to get the word out yes,yes, yes.   Experience is the best teacher.”

“I agree that experience is our best teacher. If you haven’t experienced things how could you give advice?”

“Knowledge is power, knowing your HIV status truly allows you to start living a healthier life, whether you’re are positive or negative.”

Want to know more about how to spread the word on HIV testing? Check out the latest promotions at AIDS.gov and, as always, feel free to share your own experiences there and with PatientsLikeMe.