7 posts from September, 2008

PatientsLikeMe honored with award of distinction at Ars Electronica

Posted September 26th, 2008 by

Ars Electronica – one of the foremost centers for art and technology – honored PatientsLikeMe at their annual festival with the Award of Distinction. The Prix Ars Electronica is one of the most prestigious prizes in the fields of media, technology, animation, and interactive art.

This year, there were a record number of submissions with 4,056 overall.  More than 220 online communities were competing in the newest category: Digital Communities. Previous winners in this category include Wikipedia, Free Software Foundation and Akshaya.net.

JF Presenting PLMWhile PatientsLikeMe has been honored and cited for its innovation in the area of health and medical research, we were thrilled to be recognized directly for our social and artistic value. Central to PatientsLikeMe, and what drew many of us to work here, is our commitment to empower individual patients to become informed, engaged participants in both their own healthcare and in the creation of new scientific knowledge. This prize attests to our contribution in this area.

At PatientsLikeMe, as an inter-disciplinary team of researchers, designers, and engineers, we are building a platform for patients to both share and use health data.  Our goal is help patients leverage their own experiences to make good decisions and improve outcomes.  As a research scientist here, it is exciting to see how our carefully designed tools engage patients to record, reason with and apply data to inform all types of medical decisions.

So, it was a particular honor for me to be able to travel on behalf of PatientsLikeMe to Ars Electronica in Linz, Austria to accept this award focused on the social and creative value of the online communities for patients. I presented PatientsLikeMe to an international audience and the audio is available as a podcast on their site. Relationships with these new audiences and the resulting discussions help us continue to improve tools for patients to share and leverage data to improve outcomes.

PatientsLikeMe member jeanafrost

How representative are PatientsLikeMe patients to the general population?

Posted September 24th, 2008 by

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 member pwicks PatientsLikeMe member dwilliams

Living Positive with PatientsLikeMe (AIDS Walk Chicago)

Posted September 24th, 2008 by

AIDS Walk Chicago_walkersYou’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.

AIDS Walk Chicago_walkersThe 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 member lscanlon

PatientsLikeMe sponsors MS Challenge Walk on Cape Cod

Posted September 19th, 2008 by

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 Walkers finishing the Cape Cod Walk 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, PatientsLikeMe quiltmade 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.

PatientsLikeMe member thorgan

PatientsLikeMe and The Power of Peers

Posted September 16th, 2008 by

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.”

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 img_1024.JPGmore 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.

PatientsLikeMe member moakes

Bringing you Medicine 2.0

Posted September 12th, 2008 by

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 2829408831_68c90c249f1.jpginternational 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.

PatientsLikeMe member mmassagli

PatientsLikeMe Announces Enhanced Treatment Reporting

Posted September 2nd, 2008 by

Treatment reporting is a critical part of PatientsLikeMe. Sharing your information lets others see what treatments you’ve tried…and how well they’ve worked. It also gives you a precise record over time to show your doctors.

We’ve had several requests to enhance our treatment reporting tools, and well, we listened. Our top-to-bottom treatment overhaul is officially live, and we are delighted to unveil the major improvements we’ve made. We think you’ll find that not only is it easier to enter treatment information now, but the end result is more useful too.

picture-5.pngFor a good overview, check out our screencast demonstrating how the new treatment reporting process works. Below are some of the most important changes.

Easier updating
To start, we’ve put all treatment updates on one page. We’ve made it easier to find and add new treatments, see what data has been entered, learn what data is missing and update or add information. Plus, we’ve made it simpler to confirm that your treatments have remained the same – something many members have asked for!

More accurate dosing data
We’ve upgraded our treatment database to include more accurate dosing information. In turn, we use this to help you enter more accurate information.

More comprehensive evaluations
We have made significant enhancements to our treatment evaluations. Our new survey captures information about efficacy, adherence, burden, side effects, unexpected effects, advice/tips and cost, providing a more complete picture of your treatment experience.

Improved treatment reports
We’ve redesigned our Treatment Reports to synthesize all of this new data in an easier-to-understand format. We believe you will find these new Treatment Reports are far more informative than before.

Now that we’ve made these extensive changes, we urge you to take a spin. Review your treatment information. Make any needed updates. If you have been on any treatment for more than six months, provide evaluations. This will make the new Treatment Reports even more valuable for us all.

Thanks for your keen input on this aspect of the site, and please, keep it up. We’d love to hear your feedback about the overhaul!