The Value of Openness: The PatientsLikeMe Blog

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!

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.

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.

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.

Despite some recent happenings in the news, we’re here to assure you that health 2.0 is still very much alive.  Here’s our recent announcement about our new partnership with 23andMe.

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PatientsLikeMe, the first community-based personalized medicine platform for people with life-changing conditions, and 23andMe, the world’s leading personal genomics company, announce a partnership today to help people with Parkinson’s disease.  PatientsLikeMe is teaming with 23andMe on its effort to recruit 10,000 people with Parkinson’s for a massive study of the disease, and give patients a way to learn more about their personal genetics.

“Today, technology is moving faster than the research establishment,” says James Heywood, co-founder and chairman of PatientsLikeMe.  “We are excited to see what happens when you give patients the ability to see variations of their disease and compare it to their own, while enabling them to easily define their personal genomics.”

More…

PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s research. As Lori said last year, “Unity” is the perfect word to describe this event. People from all over the world came together for a common cause and the results were staggering!

Getting to meet PatientsLikeMe members in real life is always a treat, and this year we saw old friends and met some new faces too! For me, one of the highlights was getting to see the amazing quilt made up of squares created by our PD members. Not only is it a stunning piece of craftsmanship, but it represents the spirit of collaboration that is so central to PatientsLikeMe. Members from across the country, many of whom have never met each other, shared their own artistic talents in their individual squares and the final product represents their collective strength, wisdom and passion. It was a great symbol of the power of our PatientsLikeMe community and all their efforts this Parkinson’s Awareness Month.

Great work Team PatientsLikeMe!

It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (”PokieToo”) giving her real-world experience of living with condition.

WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo.  A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.”   “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.

DID YOU ALSO KNOW…

• More than 1,500 of our patient members are 50-yrs old or older
• 140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
• Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.

How are our members treating their condition?

• Patients are using more than 1200 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
• The top lifestyle modification reported by our patients is physical exercise;  and walking is the #1 exercise cited.
• The most widely used prescription drugs reported by members are Carbidopa-Levodopa (Sinemet), Pramipexole (Mirapex) and Rasagiline (Azilect)
• Top 3 supplements: CoQ10 Coenzyme Q10, Multivitamins and Omega 3 Fish Oil

What are their major symptoms?

• For more than 1,300 patient members, a “tremor” was their first symptom of the condition.
• The 5 most common primary symptoms reported include: Stiffness/Spasticity, Slowness, Fatigue, Excessive daytime sleepiness (somnolence) and Insomnia.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.

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

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

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

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

13.1 grueling miles.  A half marathon.  Running that distance for anyone is a challenge that takes months of training and dedication.  Imagine running that distance having fibromyalgia.

My close friend and PatientsLikeMe member, Minnie Lee, has fibromyalgia and courageously ran in the Surf City Half Marathon last Sunday.  This wasn’t even her first time running it.  She has dedicated herself to running and finishing half marathons and triathlons despite her disease.  Pain or no pain, Minnie finishes.

PatientsLikeMe was there to sponsor and encourage Minnie to achieve her goal:  finish in under 3 hours.  “I run because so many people can’t,” says Minnie breathlessly through tears after crossing the finish line.  Supported by close friends Shirley Huang and Lilian Tham, Minnie finished strong despite the pain.

Yes, Patients Like Minnie can run 13.1 miles!

For more inspirational videos from our fibromyalgia community, visit www.youtube.com/PatientsLikeMeFibro.

This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had developed for patients with the condition. This year, as part of a session on the history of ALS/MND patients online, I was given the opportunity to show attendees some of the improvements we had made to the site since that time.

* Percentile curves for patients with PLS - When I said that we had more than 100 patients with PLS registered on the site, there was a collective gasp from the audience. Our large sample has allowed us to show PLS patients how they compare with other PLS patients for the first time. (Available to PLS members of the ALS/MND community)

* Geomapping - Patients on our system can see a map of the world and see registered users nearby using a Google Maps API developed by our resident geomapping whiz Steve Hammond. This allows patients in isolated areas, or even busy cities, to find other patients like them who they might want to meet up with or talk to on the phone. (Available to users in all our communities)

* Treatment database - By integrating the Multum Drug Database into our treatment system, users are presented with an accurate list of possible dosages for the treatments they are taking. We have also added an evaluation system that lets users share their opinions about a drug’s efficacy, adherence, burden, and side effect profile. (Available to users in all our communities)

* Lithium study tool - We have showcased our custom lithium study tool in a number of recent blog posts, but for many delegates this was the first time they had seen the evidence we’ve been collecting on lithium in ALS/MND.

* Future state modeling - Simply “tracking” a patient’s progression has never been the goal for us; we’ve always wanted to take past information and use it to predict the future state of an individual patient. In relatively linear diseases like ALS, that means we can help patients to plan in advance for when they might need a wheelchair or other equipment. It’s often the case that ALS/MND patients don’t get the equipment they need until several months after they could have benefited from having it. Such a tool would give a customized prediction for the individual patient. After all, most of us don’t want to know about the “average” patient, we want to know about a “patient like me”!

Back in November, Jamie Heywood and I attended the 19th International ALS/MND Symposium in Birmingham, UK.  As part of an ongoing series of blog posts reporting from that conference, I have put together a narrated slideshow which is an abridged version of a platform presentation I was asked to give at the conference about the past, present, and future of the internet for patients with ALS/MND.

As you will see in the presentation, there has been a strong online presence in the ALS/MND world since the early 1990s. Over time, the proportion and representativeness of the patients participating has increased dramatically, to the point that we now have some 10% of the USA’s ALS/MND population registered on the site.

Next up in our series…a blog post looking at some of our recent improvements to PatientsLikeMe for people living with ALS/MND.

PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one.

Earlier this fall, the venue for this conversation was the annual meeting of the American Medical Informatics Association (AMIA). Typically, AMIA is a forum for medical researchers to discuss clinical-facing informatics projects like electronic medical records, doctor decision-support systems, and standards. This year, the event agenda included its first-ever panel on patient collaboration, with PatientsLikeMe presenting on how our members use informatics systems to spearhead original research.I presented a paper co-authored with Michael Massagli chronicling the activity on the ALS site regarding the site-based evaluation of Lithium. Questions about the paper were enthusiastic and challenging as medical researchers contemplated the full implications of patients conducting research outside of the healthcare system. The most provocative comment came from Danny Sands of Cisco who introduced the possibility that while he saw the value of PatientsLikeMe, we may also be “polluting clinical trials” - when patients with rare diseases take experimental treatments before being enrolled in (his) randomized clinical trials. My response was that he and others in the clinical trial world may feel differently if someone he cared for was diagnosed with ALS – a disease where patients have limited time to explore treatment options. As medical researchers, we should be proud of our patients who are taking an active role in their health care; I know I am.

The truth is, whether practitioners discuss it or not, people have long experimented with novel, off-label, and alternative treatments (some with and some without their physicians). Barring the few cases that are published in academic journals, these individual efforts only resulted in a tiny group of people learning anything from their experience. By organizing these individual efforts, PatientsLikeMe allows the data to be pooled and recorded systematically for analysis.

Of course, randomized clinical trials (RCTs) are the most rigorous means to systematize experimentation, but they have their draw-backs. They are expensive to run, time consuming (they take years, our study took months), and may be subject to more confounds than their organizers would like to believe.

While coordinated patient-led research on PatientsLikeMe is new, and as such presents novel challenges in its methods and credibility, we have now glimpsed its promise, its potential. Lithium was a first effort to study one treatment in one condition; it is just the beginning. There are many other treatments being used listed on the site by our patients that are not – for a variety of reasons - being studied systematically anywhere else. For example: Low Dose Naltrexone (LDN), Stem Cell Transplants in ALS, 4-Aminopyridine (4-AP), Botox injections to manage excess saliva, etc. These demand our attention.

Regarding the Lithium experiment, one patient described the situation better than I ever could in this forum post: “This is an amazing process.  Instead of sitting on the sidelines searching for promising research we are for the first time ever (from what I can determine) taking a group of people with a particular disease and taking an active role in researching a treatment.”

PatientsLikeMe’s members are not only learning how to best care for themselves, they are contributing their otherwise anecdotal experience to a body of data. Motivated by their own desire for better outcomes, patients are reporting directly to the website and building a body of evidence not being collected anywhere else. Together, with our carefully designed tools to capture, display, discuss and analyze this data, we are creating a repository of patient reported outcomes that will add patient data to evidence-based medicine and advance our knowledge.  Isn’t that what it’s all about?

World AIDS Day is a milestone in so many different ways.  It has marked the persistence of HIV and its impact on our world, but we hope that we are approaching a turning point where World AIDS Day will come to mark progress.

What this day marks, however, is that being HIV positive doesn’t mean one will automatically get AIDS anymore.  People are living longer and medications continue to improve the health and quality of life for people with HIV.  There’s still a long way to go, but progress is being made.

A year ago on this day, the PatientsLikeMe HIV Community was open to a small group of beta-testers, and one of them asked in the Forum if people in the world-at-large even take notice of this day, or have any idea what it means for people with HIV?  Now, we have over 1,600 patients who are sharing their experience, giving each other needed information and support.  And they are using PatientsLikeMe to empower themselves to show the world on World AIDS Day and every day that there is life with HIV.

To learn more about our online community, check out our “2008 HIV Community Report:  Embracing the Positive.”