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.
- Filed Under: Mental Health
- Tags: bipolar, conference, DBSA, depression, Event, maureen oakes, Mood conditions, patients, Patients Like Me, PatientsLikeMe, power of peers, Stephen Propst
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.
- Filed Under: Research
- Tags: data-sharing, health, health 2.0, health data, jeana frost, JMIR, medicine 2.0, mike massagli, patients, PatientsLikeMe, Research, social network, symptoms, treatments