The Value of Openness: The PatientsLikeMe Blog

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 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.

Over the weekend, PatientsLikeMe was an exhibitor at the Depression and Bipolar Support Alliance’s 2008 National Conference, which took place September 11-14th in Norfolk, Virginia.  The theme was “The Power of Peers.”

While I spent most of my time at our sponsor table answering questions about PatientsLikeMe, I overheard other attendees discussing a concept I found very interesting. A talk called “I Am Not My Illness: The Importance of First Person Language” by Stephen Propst  prompted a lot of discussion from attendees about the distinction and power of saying “I am bipolar” versus “I have bipolar.” He noted that people with other conditions do not say “I am cancer” or “I am diabetes” and that the language we use has the power to change how we think about the intersection of our health and our identity.

As I listened to people hashing out the details and implications of being more thoughtful with our language, I thought more about how it relates to the collective power of peers.  Face to face conversations are a time-tested method for empowering others and making change, but having conversations online can magnify your message far beyond a two person discussion. Having read over 2000 threads in our Mood community in the last 7 months, I know that our members empower one another on a daily basis.  While a single forum thread may have 20 replies, it can be viewed by hundreds of people, escalating the impact of the conversation far beyond its participants. Add to that the ability to see each person’s status from their shared health data profiles, and everyone has the opportunity to learn in multiple ways on PatientsLikeMe.

This single lecture sparked great conversations among the few hundred folks who attended the event, and now the conversation is continuing with our members. Empowering patients through conversations and shared data is producing real change: that’s the power of peers.

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.

Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70’s and 80’s. However, about 10% of patients buck this trend and experience their first symptoms before the age of 40; these patients are known as Young-Onset PD or YOPD for short. The R&D team here at PatientsLikeMe recently carried out a research study examining an aspect of PD that has only recently gained much attention, “non-motor symptoms.” When a clinician diagnoses PD, they are usually looking for a triad of cardinal features, specifically tremor, slowness, and stiffness. However, in the past 5-10 years it has been increasingly clear that patients with PD also experience a number of non-motor symptoms, ranging from dizziness to constipation, from a loss of sense of smell to hallucinations, and from apathy to urinary problems.

Several of our members had mentioned in forum postings that they were finding non-motor symptoms, such as cognitive confusion and fatigue, to be a particular burden, so we decided to carry out a research study using the well-validated Non-Motor Symptoms Questionnaire (NMS-Quest) developed by Professor Ray Chaudhuri and colleagues. We sent the survey out to all of our PD patients earlier this year. In total, we got responses from 307 patients, including 260 “classic” PD patients and 46 with YOPD. The results show a higher number of non motor symptoms among YOPD patients (14/30) than PD patients (11/30). That’s an average of three more non-motor symptoms for YOPD patients than their older counterparts. More specifically, YOPD patients (at the individual level) report apathy, concentration problems, falls, pains, and sadness more often than older onset PD patients.

You can listen to a short presentation, or read our full report for a more detailed analysis of our methodology and findings, but there were several points I found particularly interesting.

• It’s unusual enough to have YOPD, which can be an isolating and confusing experience. For YOPD patients to experience even more non-motor symptoms than patients with more typical PD seems alarming, and requires urgent attention from clinicians, researchers, and patient advocacy groups to ensure their needs are being met.

• This sentiment is echoed in some of the patient interviews we conducted with members earlier this year. Click here to view the first in a series of interviews to be posted on our YouTube page, and hear for yourself what YOPD patients had to say when we asked what people should know about PD. (More videos to come on our YouTube and Facebook pages, so stay tuned!)

• YOPD patients are more likely to still be working, to be supporting families, and to be looking after young children or parents. Therefore, even minor changes in cognitive function or mood could have a substantial impact on their ability to function.

• Because YOPD patients are relatively rare and spread out, researchers aren’t often able to gather sufficiently large samples to study them in detail. A research platform like PatientsLikeMe provides an ideal opportunity to collect high quality data in an efficient way.