The two columns by Bill and Emma Keller about Lisa Bonchek Adams unleashed fury this week from supporters who questioned the manner in which Adams, who has metastatic breast cancer, “lives her disease” through her blog and Twitter feed.
Amid reams of articles, blogs, tweets and Facebook posts, patient advocate and breast cancer survivor posted Liza Bernstein grabbed our attention for posting a brilliant yet simple observation. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:
“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”
And Keller went on to describe what those experts thought.
Bernstein and other e-patients know well that Lisa Adams is an expert. In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.”
Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.
Insights from Adams and others living with a serious illness are democratized through the online communities in which they participate.
At the exact same time on Monday that The Guardian was withdrawing Emma Gilbey Keller’s column about Adams, and while The New York Times’ ombudsman was publishing her defense of Bill Keller, people affected by life-threatening and life-altering diseases were exchanging essential information online.
On Inspire and other health social networks, and through blogs and other online channels, countless cancer experts — defined here as people affected by cancer — were seeking and giving information, and evaluating that information as it related to treatment plans for themselves or loved ones.
They weren’t asking for approval first from “cancer experts,” as may be defined by Bill Keller. They were acting as e-patients do: they were engaged, empowered, and educated, as Liza Bernstein succinctly stated.
In a span of just several hours on Monday, we saw members of our own Advanced Breast Cancer Support Community discuss in detail such topics as:
- . One woman reported to her group, “The A/A combo has been dropping my tumor markers a couple of hundred points a month.”
- Whole body hyperthermia to treat triple-negative breast cancer (TNBC).
- How to share with your long-time oncologist your desire to seek a second opinion.
- Managing nerve pain as a side effect of Faslodex and Xgeva.
Does sharing personal details about that kind of medical information, be it in a blog, or in a cancer support forum, equate to what Emma Keller suggested were funeral selfies?
What social media has taught us is that the subject of the Kellers’ commentary, Lisa Adams, has a resounding voice of her own. Members of her very real online community of friends, peers, readers and admirers have voices of their own as well.
The Kellers blundered into an online community of people bound together by cancer and other life-threatening and life-altering diseases.
The community’s members have an audience as impactful as those of traditional media like The New York Times and The Guardian. The only thing remarkable about the Kellers’ columns is that the angry reaction took them by surprise.
Brian Loew is co-founder and CEO of Inspire, a company that builds and manages peer-to-peer online support communities for patients and caregivers.