The Value of Openness: The PatientsLikeMe Blog

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.

PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week.

The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and spotting PatientsLikeMe t-shirts in the crowd. Paul was a presenter at the conference, and his session “Taking Control of Your Parkinson’s by Sharing Online” was well attended and received by current and future PatientsLikeMe members. One of the themes that came up repeatedly at the conference is that living with YOPD, like any other life-changing illness, can be a very isolating experience. The YOPN Conference presented its attendees the opportunity to spend the weekend learning more about their condition, expanding their knowledge about the latest treatments and choices, and most importantly, meeting other patients like them.

As a community manager at PatientsLikeMe, much of my job is watching. I read the forum to observe what people are discussing, I look for questions and ideas on how we can improve different areas of the site, and watch as members learn and relationships grow. But, one of my favorite things to watch is when our members meet each other in real life. As they did at the Unity Walk, many PatientsLikeMe Parkinson’s members wore “badges” with their usernames and pictures to help identify each other as they met their online friends face-to-face for the first time. These relationships blossom very quickly because they are rooted by their shared experiences, and that is a wonderful thing to watch.