Time on the Internet can often be measured by the millisecond. We bemoan the shallowness,brevity and sensationalism of topics that seek to capture our momentary attention on our news feeds. Yet in the early part of 2014, a controversy hit the Internet with the intensity of a meteor and then instead of rapidly burning out, gained in intensity and continued discussion. The controversy became known on the Twittersphere as #Kellergate and revolved around separate columns written by former New York Times editor, Bill Keller and his wife, Guardian columnist, Emma Keller opining on blogger Lisa Bonchek Adams' frequent use of social media as a platform for chronicling and sharing her experience of living with progressive, incurable cancer. Topics of public disclosure of illness, ethics, dignity, TMI (too much information), choices surrounding treatment and death and dying were thrown into the open forum of the Internet. Without any precedent for such public sharing in real time, dialogue became divisive and heated. What appeared to be missing from the discussion was the impact of social media tools and online communities on the large population of those living with chronic illness. Attempting to add some insight to the phenomenon of illness blogging, I wrote a piece in early 2014 for WBUR's Cognoscenti site: Memo to Bill Keller: This is Why Patients Blog About Illness
Now more than half a year later, the discussion has stepped away from the specifics of the Keller/Adams controversy and has entered into a broader conversation on the issues of disclosure, community, isolation and connection. The international conference, Medicine X, held annually at Stanford University, has deemed this an important topic for the upcoming 2014 conference and has invited me and several colleagues to present a panel discussion entitled: Communicating the Experience of Illness in the Digital Age: Reaching Beyond the Keller/Adams Controversy. I am honored to be the moderator of this panel of amazing thoughtleaders, Susannah Fox, Meredith Gould, and Colleen Young, all pioneers in the fields of peer-to peer-health, online communities, community management and the evolution of communicating the experience of illness in the digital space. As a panel we will attempt to examine and identify the key aspects of the larger phenomenon of communicating the experience of illness in the digital age that we hope will help inform the continued evolution of online communities.
I would welcome comments and discussion in the comment section of this blog -- more voices on this subject are needed as we prepare for the Medicine X conference panel. I hope to see many of you in Palo Alto, September 5-7. For those of you who can't attend, I will post live-streaming and Tweetchat information for Medicine X as it becomes available.