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.

This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006, with Paul walking doctors and researchers through the site on a laptop. This year we decided to invest more in setting up an eye-catching booth which had people coming up to us to admire our space-age gadgets as much as to see the site!

Over the course of 4 days we spoke to hundreds of conference delegates. Many doctors had said that they had been invited to join the site by their patients and were curious to find out more. We were able to use our new Google Mapping feature to show them where their local patients were, which had people queuing to see who they knew that was registered on the site! Several researchers were also interested in forming collaborations and we hope to be able to get our users involved in more research over the coming year.The most common questions people had for us were:

- Do people really want to know about their progress?: Our answer would be that PatientsLikeMe allows them the option to find out if they choose. Many professionals feel that it is their responsibility to protect patients and carers from distressing information. However, we believe that everyone’s information-seeking preferences are different and by giving people the choice we are empowering them.

- Don’t you get a lot of people pushing their products?: We have a few ways of preventing this. First there is our community of members, who are a very switched-on group. If anybody posts something suspicious or overtly commercial we normally hear about it in a matter of minutes and are able to respond appropriately. Secondly we have a clear emphasis on sharing what has been helpful, but we ask people not to try and persuade others to change their regime; that is a choice for them to make. Finally, by giving patients the tools to look at each other’s outcomes, we encourage people to put their data where their mouth is. If “supplement x” has worked wonders for them, we would encourage them to enter in their data so other people can see for themselves.

- What does this cost patients?: Nothing! Because our business model involves partnering with pharmaceutical companies to encourage their participation in disease communities, we don’t have to rely upon advertising, spam, or subscription fees to sustain our activities. We feel that being a neutral space from the perspective of industry and non-profits is best for everyone.

- Can we tell our patients about this?: Sure! We’d like nothing more. In the new year we’ll be distributing leaflets to all the ALS/MND clinics we can find so that they can invite patients and caregivers to join us.

On the penultimate day of the conference, one of our research team, Paul Wicks, gave a platform presentation describing PatientsLikeMe and presenting some of the research that’s been carried out on the site.

His talk was met with an enthusiastic response and was identified as a highlight of the symposium by several delegates. Click the video below to hear Paul take you through his eight minute presentation.

Without doubt, one of the most inspiring parts of any conference is meeting up with our users, and we were thrilled to see a few of them at the conference. We heard how PatientsLikeMe helped them understand more about their condition, meet other users in their area, and made them feel like they were a part of the fight against ALS/MND. Next year the conference is in Birmingham, UK, and we look forward to having lots of ground-breaking research to show off there!