2014 Stanford Medicine X: Online Patient Communities

"Communicating The Experience Of Illness In The Digital Age" is the title of a panel from the 2014 Stanford Medicine X conference. This panel was moderated by Pam Ressler with panelists Susannah Fox, Meredith Gould, and Colleen Young. The video is above from the MedX YouTube page. The text summary is from this storify account. Also check out the groups pre-conference notes.

Do online communities matter? Of course, they do. But, what IS an online community? How do you define it? That's a more difficult question. Does just telling your story get you into an online community? Does self-disclosure get you into an online community? This panel was one of the ones that I was really looking forward to, especially with my pre-conference chat with our pal Meredith Gould in the video below.

Here are some of my reactions to some things that happened in the panel discussion and beyond:

  • Communicating Illness In The Digital Age: I read the pre-conference notes from this group. The idea of this panel started with a very public attack on someone who disclosed their illness online.  As I read more about this controversy, I saw that the online community rose up to respond to this bullying tactic. People should be able to disclose this type of information out there online. In a recent post of mine, there was a nasty comment left by a reader. Revealing and discussing your illness online should be allowed, and I'm glad this group had that discussion.
  • My Self-Disclosure Story: I started my online life as an anonymous blogger. But, as I started to connect with the people who were leaving comments on by blog posts (this was before twitter & facebook), I felt compelled to reveal myself, little by little. I started with really grainy out-of focus black-and-white pictures to see what the reaction was. Then, I began the slow process of revealing my true name and photo, etc. At first, I received some private and public attacks. But with time, I was able to accept that with self-disclosure comes good and bad, and you have to be able to handle both. I totally understand people who are hesitant to get out there and tell their story on social media. The panelists in this discussion did a good job in outlining both the positive and negatives of self-disclosure.
  • The Role of Self-Disclosure in Online Communities: Just because you have a group of people together, they don't necessarily make an online community. Self-disclosure is certainly one of the first steps. But, you need a community manager and community members to be ready to receive self-disclosures from members. It is definitely a big leap for a person to self-disclose something that may have them harshly judged by others. This should be celebrated and hopefully foster further self-disclosure. "The value of online communities lie with the community managers who drive them."
  • "How might we, make this look less like witchcraft, because that's what people outside the community, sometimes think of us?" - Susannah Fox. This is a great question and something similar that I get asked a lot. It is very difficult to explain the connection that people have to one another, whether it's an in-person community, or an online community. For those on the outside, it can definitely look "cult-like" and weird. People have a need to belong and people have a need NOT to feel alone. Communities, whether online or in-person, satisfy this need. 

In my closing thought, even though this is entitled "Online Patient Communities," all these ideas and concepts can apply to any online community. I think about my own peer group of Family Physician social media activists called the #FMRevolution (meaning Family Medicine Revolution). Our numbers could be stronger and our activity on twitter centers around our own Family Medicine conferences. But, definitely something missing is the role of digital self-disclosure. When we get together in person, I treasure those times with my FM peers as we catch up. But, could our online community strengthen if I could decrease the discomfort of digital self-disclosure? I will certainly try to answer that question...