“International patient engagement advocate, speaker, author of Laugh Sing & Eat Like a Pig, blogger. Boston based, http://epatientdave.com”
The “About Dave” link on Dave deBronkart's website tells his story much better than anyone else could. It reads: “‘e-Patient Dave’ deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma at a very late stage. The median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was ‘grim,’ as one website described it.
“He received great treatment at Boston's Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the biologic therapy program helped him participate in a clinical trial for the powerful but severe high-dosage interleukin-2 (HDIL-2).”
His last treatment was July 23, 2007, and by September it was clear he'd beaten the disease. His remaining lesions have continued to shrink.
“An accomplished speaker and writer in his professional life before his illness, today Dave is actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed, and used by the patient. This is revolutionizing the relationship between patient and health care providers, which in turn will impact insurance, careers/jobs, quality of life, and the distribution of finances across the entire spectrum of health care.”
How has your health/life been affected by social media?
“Social media has connected me with information I might not otherwise have found. For example, three out of four patients with my disease never hear about the treatment I got. Social media also connects me to empathy, by allowing me to connect with others in my situation. And it has given me practical information about dealing with side effects of therapy. My oncologist, David McDermott, told me, “You were really sick—I'm not sure you could have tolerated enough IL-2 to do the job if you hadn't been so prepared and ready to see it through.”
What forms of social media were most important to you when you were first diagnosed?
“That depends how tightly you define social media. To me, it includes any media that connect me with others, sometimes including email. In my case five years ago, all the information I got came from ACOR's [Association of Cancer Online Resources] kidney cancer listserv. But I also used CaringBridge.org as a social support network.”
You say you are a proselytizer for patient engagement. What forms of social media have been most important to you in promoting the e-patient movement?
“Proselytizing involves reaching people who haven't been reached and spreading ideas that they haven't seen yet. Blogging is the way to lay out ideas and lines of thinking for others to read. Blog posts are persistent, so you can link to them far into the future.
“Twitter has by far the greatest reach, velocity, and virality. Social media wizard Jon Lebkowsky (@jonl) taught me in 2009 that Twitter is great for finding and getting found, and boy was he right! On April 21, 2009, I had 900 followers; four months later, I had 1,750; and I'm now closing in on 12,000—and 1,000 people have me on their Twitter ‘lists.’
“A lot of people also use Facebook, but for me it doesn't spread things much. Health care activism seems most active on Twitter. So I write about something on the blog, and then I tweet about it.”
Who are your favorite social health “superheroes”?
“Oh, gosh, that's a long, long list. @DanaMLewis started “tweetchats,” which have become one of the best uses of Twitter, in or out of health care. She's now at Swedish Medical Center in Seattle. There are many docs who are exemplary on Twitter: @SeattleMamaDoc, @MacObGyn, @HJLuks, @JackWestMD, @Berci (a Hungarian who created the great www.ScienceRoll.com blog and www.Webicina.com site), @DrDannySands (my primary care doctor), @ScanMan, a radiologist in India, and many many more.
“Also, @LeeAase (“azey”) heads up the Mayo Clinic's Center for Social Media, which is clearly the best way to learn about social media in health care.”
Your TedX talk, “Let Patients Help” (http://bit.ly/T45XtT) is in the top half of “most watched” TED talks. How can social media most effectively be used to “let patients help”?
“First, I'm not sure that ‘let patients help’ is an end in itself. The goal, of course, is good health, and good care is a means toward that end. My ‘let patients help’ mantra is intended to pop the illusion that patients are impotent and cannot bring value to health care.
“Having said that, clinicians can use social media to listen, learn, and lead. By that I mean, they can listen to what's being said by patients, other clinicians, and anyone else who might educate or inform them. That means they can learn things they might not have otherwise known. And they can lead by adding to the conversation when they publish things that are not already in the stream.
“@SeattleMamaDoc tells us that clinicians should know what's being discussed in social media, and where there's crap being flung, doctors should balance it with quality. For example, she counteracted Jenny McCarthy's vaccine wackos with YouTube mini-lectures of her own.”
How can oncologists use social media to support and encourage the e-patient movement?
“First of all, they can engage with patients online by answering questions. And they can blog about the movement, so other clinicians can see peers who have said ‘Yo, it's safe out here—some of these e-patients are pretty smart.’
“Clinicians can encourage the people who organize their professional conferences to have a social media track. And they might want to join Mayo's social media network and attend its fall conference. In particular, its ‘social media residency’ offers solid hands-on skills training.”
How can oncologists encourage and train their patients to use social media to become e-patients?
“That's really personal for each clinician. I suggest that, for the diseases that a physician treats, he or she should dig around to find which online communities are reliable, if any. Then introduce those sites to patients or family members who are likely to be interested.
“My primary, Danny Sands, recommends breaking the ice by asking ‘Are there any websites you like for health information online?’ This is analogous to when we started asking patients about sexual and drug practices: if the doc raises the subject, it means it's not unmentionable. This also opens the door to recommend certain sites, if you want, and to invite the patient to ask about a site: ‘Hey doc, does this look like a good one or a clunker?’
“It doesn't always have to be the doctor who has this conversation. Some practices now are appointing nurses or other staff members to serve as ‘information coaches’ for this kind of discussion.”
Dave deBronkart was also one of the participants in a very well-received session at this year's ASCO Annual Meeting, on “Leveraging Virtual Patient Communities for Optimal Clinical Care and Research.”
#11 in a Continuing Series
Previous Oncology Social Media Profiles can be found in this Collection on the OT website: http://bit.ly/OT-OncologySocial MediaProfiles