The Value of Openness: The PatientsLikeMe Blog

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!

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.

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”!

As we end the year, we give you the last 2008 video from PatientsLikeMe and the first of our new fibromyalgia community.  We asked this newly launched community to tell us “How are you overcoming fibromyalgia?”  This is what they had to say:

Thanks to all of you who contributed your “voice” to this video.   It’s truly a reflection of patients helping patients live better every day.  We look forward to hearing more voices in 2009!

Happy New Year!

A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast conference held right here in our Cambridge, MA backyard.  It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S.  In the world of Health 2.0, we have a lot of great opportunities to impact healthcare in a positive way, including shaking things up and putting patients back at the center.  With so many new and promising companies emerging in the space (many in attendance at the Boston event), we have to start thinking about what happens next.  How can we really make change, and what changes need to be made?

I believe we, as the eHealth community, need to focus on two major goals:  1) solve patients’ problems, and 2) create business models that allow us to do #1.  The PatientsLikeMe business model is straightforward.  We build online communities where patients share structured information about their disease to help themselves and others.  In turn, we make money by selling that data.  We are open with our patients about how and why we sell this data (and specifically what data we sell).  They understand this exchange and they’re all for it. “Sell, sell, sell” someone recently wrote in a discussion about our business model.  Why?  Because they know our goal in selling is to help pharmaceuticals companies, medical device companies, healthcare providers, and others in the industry learn more about patients.  We’re giving those companies the kind of information that can help improve the products/services they’re creating for patients.

I don’t want to prognosticate about what types of business models will work for all Health 2.0 companies as the industry evolves (because, ultimately, this is an evolution).  It’s up to each company to figure that out.  I do believe that there’s no wrong path when you keep both those goals in your sights.  Help patients, and create business models to do that.  Moving forward as a company and as an industry, that’s exactly what we need to do.  Now let’s get back to work…

You’ve spotted us again!  This weekend, PatientsLikeMe was a proud sponsor of the AIDS Walk/Run at Grant Park in Chicago on September 20, 2008.  The event, benefiting the AIDS Foundation of Chicago and 70 other local organizations, brought together more than 7,000 people on this warm, sunny day to show their support in the fight against HIV/AIDS.  Together, participants raised a projected $400,000 for AIDS-related services.

David Williams, Catherine Brownstein and I were at this event, and we were thrilled to meet so many great people, including one of our current members.  As we saw at the AIDS Walk in Boston, there were an overwhelming number of support groups and organizational leaders there dedicated to helping patients.

The PatientsLikeMe HIV community, in particular, was met with great enthusiasm.  Our booth visitors loved that we had social networking components on the site, but were more excited about the patient profiles and treatment reports.  We displayed sample profiles to show how members can chart their treatments, symptoms and outcomes (like CD4 counts and viral loads), and use that information to find others exactly like them.  Many people had heard of websites that offer a place to chat with others, but this health data-sharing approach was new and interesting to all.  Let’s just say heard a lot of  “wows,” which is always exciting and validating for us.

If you’ve been following our blog, you’ll notice that we’ve been out and about quite a bit this Fall spreading the word about PatientsLikeMe.  We’ve exhibited and presented at many events, including the Young-Onset Parkinson’s Network Conference, DBSA Annual Conference, MS Challenge Walk and now the AIDS Walk Chicago.  We hope those we’ve met will find their way to our site, and share their stories, their health data, and their passion for advancing the knowledge of these conditions.

We’ll be here – our community arms wide open.

PatientsLikeMe was recently one of the sponsors for the 2008 MS Challenge Walk on Cape Cod, a three-day, 50-mile event held on September 5-7, 2008. More than 620 walkers participated, each raising a minimum of $1,500.  Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research.

The walkers persevered through some very nasty weather during parts of the walk.  Fortunately, the last day was a spectacular early Fall day in New England, as the event ended with the parade of walkers onto the Hyannis common.

We had the chance to talk to  many participants over the course of the three days, and showed them how PatientsLikeMe can help them share their health data and experiences and learn from others. We showed them a public member’s profile to demonstrate how they could use enter treatments, symptoms and outcomes and chart the course of their disease over time.  They were also very excited to see how this information is aggregated in our Treatment Reports.  Whether they wanted to share their positive experiences with a specific treatment, or were looking for more information about a newly considered treatment, walkers definitely saw great value in our treatment report/evaluation system.

This event is also where our MS quilt made its public debut.  The quilt, made up of individual squares created by many of our charter MS members, brings home the support aspects of the site.   It highlights some of the people who have helped create and grow the site into one of the largest and most vibrant MS communities online today, with more than 7,600 members from around the world.  The process of actually creating the quilt also represents what PatientsLikeMe is about:  pulling together patients’ experiences and data in a way that allows both the individual and comprehensive view of the disease.

This was an inspirational event. It was rewarding to learn first-hand from people about the challenges they face dealing with MS, and to offer them a resource where they can find and learn from others going through similar challenges.

Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for Patients and Consumers.” You can view the entire conference proceedings online.  The event is organized by Gunther Eysenbach, MD MPH, who is the editor and publisher of the Journal of Medical Internet Research, where Jeana Frost and I recently published our paper - “Social Uses of Personal Health Information Within PatientsLikeMe.” 

This was a great opportunity to update the research community on how our patient members are engaging in data-driven discussions about their health.  In my presentation, I gave an overview of the site, summarized some of our published research results, and provided examples of how patients are using our forum and profile comment tools to better understand their own and other’s experience of symptoms and treatments.  What really impressed this audience is that PatientsLikeMe is delivering the best of what “medicine 2.0″ can potentially deliver to the healthcare consumer, and patients are using it.  It’s very powerful for others to see how patients are talking with one another about treatment and symptoms experiences (supported by data in their profiles) to achieve better living.  This is exactly what can happen when we put “Patients First,” and give them a community to support the right interaction at the right time.  Our patient members today feel empowered to take back their health, and this kind of commitment will lead to better research, better healthcare and better quality of life.

by James Heywood

Update (March 7, 2008):  PatientsLikeMe ALS Lithium Research released.

Does it work?
On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is fair to say this paper includes the most promising suggestive set of data from a clinical trial ever published. I say “suggestive” because there are many flaws with both the information presented and with the publication process itself. These flaws make it so that patients and their doctors are left trying to draw conclusions about the use of Lithium to treat ALS, without actually having any realistic confidence in the data or its meaning.

For a patient, there is genuine risk either way. Lithium is not a harmless drug, and, although it is widely used, it can have significant side effects if it is not monitored properly. In addition, the reality is that in several of the last clinical trials in ALS, including minocycline and topiramate, the patients in the treatment group did worse than those in the control group. So, fears about the risk of an unproven drug are well founded. However, there is also the risk of doing nothing. If the paper turns out to be even half true, the effect on the progression of the disease could be dramatic.

We also must consider the consequences of waiting for more information. For someone with a life expectancy of several years, the consequence is obvious. Unfortunately, the harsh reality is that the traditional medical research system will not provide any better data to patients for at least 2 years – that is, 6 months to start a trial, 15 months of evaluation, and 3 months to share the data. In fact, 2 years is being optimistic, if truth be told. History teaches us that it will most likely be much longer.

History also teaches us that patients sharing stories with each other will not answer the question alone. Chinese stem cells, herbal supplements, nutraceuticals — all have been discussed extensively on the internet with some claiming cures and some describing great harm; yet we have no definitive answer. Despite the thousands of postings, very little knowledge has advanced the treatment of ALS, and patients are still left unable to make effective treatment decisions.

We can and will do better
PatientsLikeMe was built to solve this problem and accelerate the transfer of knowledge about what works and what does not. Today, PatientsLikeMe has data on the progression and history of more than 1600 ALS patients - twice the number in the largest ALS trial in history. Even before the trial results were published, 50 patients worldwide who had elected to start taking lithium, in collaboration with their doctors, have been tracking their progression and blood levels on PatientslikeMe. This is more than twice the number of patients participating in the trial itself! We have data on historical forced vital capacity, the ALS Functional Rating scale, and a full symptom battery for most of the patients who have started, as well as for all the other non-lithium users in our system.

PatientsLikeMe is committed to solving this problem. We are collaborating with Humberto Macedo, a patient, and Karen Felzer, who’s father has ALS, to recruit all patients taking lithium. Together, with all the patients involved, we will run the first real-time, real-world, open and non-blinded, patient-driven trial. We believe we will have the power, within months, to begin answering the question of how much lithium modifies the progression of ALS. Unlike a blind placebo control trial, we are watching the use of this drug in the real world, and because of the number of patients and our system’s sophisticated data modeling, we can determine the significance of each reported change in each patient as he/she deviates from his/her predicted course. There are many risks to our approach, patient optimism, the placebo effect, uncertain quality, and many other variables will compromise our data. Despite these, and many other challenges, we remain committed to solving this problem.

Our Pledge to ALS Patients
We will use all our shared patients’ data to determine, to the highest predictive power possible, the effect of lithium on ALS patients in the real world. We will share that information in real time with all patients. We commit to displaying that information in a realistic manner that communicates the true confidence and uncertainties it contains. We will build a platform that allows patients, doctors and researchers the ability to drill down into all of the data in the system, to each and every data point, so that they can trust that our analysis is based on what really happened. We commit to engaging in an open and productive dialogue about our methods, so we can all learn to do this better – today and tomorrow.

What you need to do
Regardless of whether you take lithium or not, we need your data. The more patients that share their information, the more power we have to detect the effect of lithium, or any of the other 800 treatments in our system. We encourage all patients, including those who have chosen on their own in effective consultation with their doctor to take lithium, to join PatientsLikeMe and share your data with the world. We do not encourage any patient to start taking lithium. As noted above, all drugs have risks and, in general, ALS patients have experienced more harm than good trying experimental treatments. It is important to note that, either way, you help if you participate, because the more data we have, the more ability we have to answer the question of what’s working.

Realistic Hope
In the 9 years since my brother, Stephen, was diagnosed with ALS, we have been through so many cycles of hope and disappointment. We have tried treatments that turned out not to work, and we have tried treatments that were and remain unproven. Each time, we approach the data with a little more skepticism, as each time before it has been proven to be wrong. Someday a treatment will work. I hope and pray that lithium is the one, but I am realistic given the failures of the past. The realistic hope of PatientsLikeMe is that together we can accelerate the day when we know. We know most patients use PatientsLikeMe because they want to talk to someone like them and support their friends, they use PatientsLikeMe to share their insights; they use PatientsLikeMe, because, without question, we improve patients’ quality of life through the sharing of information. We value that greatly, but we also have higher goals, Today, we start achieving them. Today, we allow patients to begin to answer how to treat ALS, and that will help us answer it for all diseases.