In Praise of Lisa Bonchek Adams, Breast Cancer Expert

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.

Adams’s blog posts and tweets certainly comfort her readers who are themselves affected with cancer, true. And yet, she and patient advocates like her offer so much more. She teaches. And she learns.

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.

4 replies »

  1. That is definitely quite interesting, You’re a strong excessively specialist writer. I’ve got signed up with a person’s feed in addition to crunch with regard to inside the seek out really ones fantastic post. As well, I have got provided your website around my myspace

  2. An oncologist faces many challenges, the greatest of which is helping patients fight daily battles against cancer that are not always won. However, widespread patient exposure to Internet technology can sometimes become another source of frustration for an oncologist. Properly managed, however, the net-savvy cancer patient can be a time-saving asset. A number of studies have shown that a more educated patient is a more compliant patient. What is essential is effective communication between provider and patient that can prevent miseducation and misunderstanding.

    As patients with cancer launch increased explorations into medical cyberspace, they are finding out more about diseases, and researching therapies and therapeutic alternatives. Increasingly, they are questioning and challenging physician authority. Properly managed, the Internet can enhance the oncologist-patient relationship, rather than undermine it. Patients can be directed to sites that improve their lifestyle, motivate greater levels of therapeutic compliance, cut down on basic questions, help combat illness more effectively, increase wellness and prevention skills, and maintain overall wellness. The Internet, when used correctly, can be a powerful educational tool.

    Clearly, it is in the best interest of most oncologists to explore, in partnership with patients, the opportunities afforded by the new technologies. Where, then, to begin? Before engaging patients, it is recommended that oncologists verse themselves in Internet basics or at least have a working knowledge of how to guide a patient down the correct electronic pathway. Once this base is established, it is recommended that oncologists approach patients when appropriate and as time permits. The phenomenon of the Internet-savvy cancer patient will only become more prevalent as time goes on.

    Studies have found that newly diagnosed cancer patients who turn to the Internet for health-related information about their cancer have an increased positive attitude about the treatments and outcome, take an active role in decisions regarding treatment, and see their relationship with the physician as one of partnership. They saw the Internet as a powerful tool that enhanced their decision-making ability. They didn’t want to feel powerless or have to rely on the doctor to make all of the decisions.

    You don’t go to blogs or discussion boards for information per se, but rather for new ideas. Simply reading the comments is an excellent learning process. They are a way of sharing information and stimulating ideas. A great way to get new perspectives and information.

    Newly diagnosed cancer patients who use the Internet to gather information about their disease have a more positive outlook and are more active participants in their treatment, according to a Temple University study published in the Journal of Health Communication.

  3. Brian:

    Great article! The Kellers must be pretty empty on some level to spit such vitriol at a cancer sufferer trying to make her way through and some sense of the process.

    I spent about a year on a cancer thread within a given website.

    Personally, I was at a loss on a lot of issues. Friends and family just did not want to talk about what I was going through. I think a lot of people just can’t deal with death and most do not seem to appreciate what a cancer sufferer is going though.

    So I had to go to the web to talk, vent, learn, support others, etc. and it brought me a great deal of solace even though it was with complete strangers.

    All I can say is that when someone’s getting their posterior handed to them by bad disease – support them – don’t beat them up cause the disease is already doing a fine job of that.

  4. Bill Keller is an ass of the first order. His condescension, the kind of loathsome name dropping one would expect from an oh-so-cool former Exec Ed of the NYT who hobknobs with Manhattan insiders and celebrity physicians, is both disgusting and insightful.

    Both my parents had their lives cut short by cancer, in the era before social media, so they did not have these kinds of social outlets, or, for that matter virtually any support from anyone but themselves and me. By the time she died, my mom had forgotten more about what cancer does to a life, and the life of a family, than Bill Keller ever knew.

    My most fervent hope is that both Kellers crawl back under one of the big boulders in Central Park, and before they next emerge to grace the rest of us with their abject stupidity, they might q.c. their communications with rational adults to see if they comport with any known metrics of common sense.