“Patients know what patients want to know.”
– Dave deBronkart
Blogger, author and international keynote speaker Dave deBronkart is a familiar name at PatientsLikeMe, as his writings and health talks tend to strike a chord with us.
You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe. After being diagnosed with Stage IV kidney cancer, Dave faced a grave prognosis. He read that the median survival for his condition was just 24 weeks from diagnosis. Then he joined a social network for cancer patients and learned of a treatment called interleukin-2 that most patients never hear about. Happily, this treatment would eventually save his life.
Today, E-Patient Dave is a healthy fellow as well as an outspoken advocate for many things we support. For example, he believes patients are “the most underutilized resource in healthcare,” and that patients should have access to their own medical data. He argues that only with complete data can a patient crack the code on his or her own health situation. As co-sponsors of the Declaration of Health Data Rights in 2009 and proponents of our own unique Openness Philosophy, we wholeheartedly agree.
To learn more about Dave’s remarkable story, as well as his plea to the medical world to “let patients help,” check out his recent TEDx Talk below. (If you’ve never heard of TED or TEDMED, it’s another concept we support because of how it generates ideas and stories that produce “wow” – another core value of our company. Our Co-Founder Jamie Heywood has even appeared on their stage for his own TEDMED talk.)
Finally, here is a powerful anecdote from E-Patient Dave about how other patients continued to help him throughout treatment. “The side effects of interleukin-2 are, as the American Cancer Society puts it, ‘often severe and rarely fatal,'” he says. “That statement left me pretty powerless, so I collected 15 firsthand stories from my patient peers who had the treatment. And when my side effects hit – the first was uncontrollable chills and shaking – I knew what is was. I knew what to expect, and I knew how other patients like me had gotten through it.”
Wow.. I think you didn’t watch the same video? It is my understanding from his talk that Dave misunderstood his prognosis as a result of a google search? His doctor already knew about and recommended the life saving treatment he got and it was his doctor who directed him to ACOR where Dave learned about this treatment and found a great deal of support as a result but he didn’t find the treatment and then ask his doctor to provide it did he?
The quote “being the most under-utilized resource in healthcare” was not his but he is quoting someone else. Dave also got his care at a hospital system where patients do in fact have access to their online records and prior to his diagnosis he was part of their marketing effort.
Are you really suggesting that people diagnose themselves? That is a great deal of pressure to place on patients and their families.. In some very rare cases it can be life-saving but that isn’t what happened in this case. I might be wrong but this is NO what happened in his case..
He went to a world class medical facility, his doctor sent him to an online support group, which validated the treatment they recommended. It is a real disservice to tell people that if only they had more data they might save their life – what specific lab results or pathology results did Dave use to ask to have his treatment changed? I would hop you would use the same critical thinking skills to evaluate a anecdote as when evaluating other research?
Again this is an amazing story of a patient getting validation and support over a life threatening illness but reframing this into a patient having to diagnose and treat himself is a real disservice to the millions of people with cancer.