After a life-changing experience, Boston area businessman Dave deBronkart has re-named himself E-patient Dave. My introduction to Dave took place on January 26th, 2010. We were both invited to make presentations in Washington D.C. at the Health 2.0 STAT event. This was my first rapid-fire Ignite or Pecha Kucha-style presentation, and, frankly, I was at first a little overwhelmed by the brevity. Having been a teacher for the first decade of my career, the experience was similar to following the Assembly Day bell schedule in any school. We had strictly limited time to “tell our story,” and as the first hospital CEO in the country to have had my own blog (beginning in 2005), it was a story that I had told before in cities like Chicago, Las Vegas, Washington D.C., Charleston. What I hadn’t expected to hear that evening was my fellow presenter Dave’s powerful and inspiring story.
Interestingly enough, after retiring from my hospital CEO position in 2008, my passion had been redirected toward the one thing that touched me the most during my 22 years of hospital administration, patient advocacy. It was simple to me. The United States of my youth was changing, but healthcare, not unlike many other professions, has always been filled with terms, attitudes and activities that are mysterious, confusing, sometimes inhuman and usually concealed from the very patients who are receiving the services and benefits. Consequently, it was my desire to reach out to every person to let them in on the “inside track” to healthcare, to share with them the insights gained by my two-plus decades in the business, and to help them get the excellence they truly deserve regarding treatment, respect and care. The result was my first book, Taking the Hell out of Healthcare.
Dave, on the other hand, told the story of his own very personal journey through his near-death experiences as a patient at one of the Harvard Hospitals. His very moving and special story was one that not only touched everyone’s heart; it also demonstrated the very deep and real need for transparency, communication and access to our own health records. Interestingly, the happy ending to Dave’s story was a twist on what had been a very moving and very different ending for one of my closest personal friends about two decades earlier. So, the good news for Dave was that they had refined, improved and eventually perfected that treatment that saved his life.
The most important aspect of his story, however, was that his physician encouraged him to seek input via the Internet from other people who had lived through similar experiences. It’s where Dave found the recommendation that later proved to be the secret to his survival.
Because of his compelling story, his amazing recovery and the beauty of having lived to participate in his daughter’s wedding, there was not a dry eye in the house. As a patient advocate, I freely admit that included my own eyes. Dave is exactly what this country needs right now. He is a man who is utilizing all of the tools available to all of us via Internet connectivity, and he is pushing hard for positive change that is sorely needed in our field. So, you go, E-patient Dave… don’t stop now. In fact, don’t ever stop.
There is no question we need more online support for our oncology patients like Dave got but this story along with the “Facebook saved my kids life” are simply meme’s we want to believe about how patients can use the internet to save their life. That isn’t what happened in this case at all.
One Correction though
It was Dave’s oncologist (and treatment team) who recommended the Interlukin II treatment that saved his life NOT something he found online.
Dave did found support online via ACOR and caring bridge to help deal with his anxiety after his Doc – Danny Sands sent him there after Dave scared himself and misunderstood research he found via Google.
Years later he also didn’t understand that his records were just his billing records vis clinical ones when he tried to read them in the now defunct google health.
FYI Dave was also part of the marketing of his hospitals EHR which gave access to some of their records prior to his illness.
You know, Dr. Adners, you’re probably right on so many levels, but there is a BIGGER PICTURE ISSUE HERE that is very often missed by hospital administrators, physicians and staff. For example, in the line, “Danny sent him there after Dave scared himself . . . ” The key word there was scared. As a young man, I watched my father die of lung cancer and each physician visit, each hospital stay resulted in “misunderstood information.” As a former “nonmedical person” I can tell you that the fear of death, of dying of horrible pain, of not living for your daughter’s wedding, not getting to hold your grandchild . . . all of those emotions are real.
I suggest that you accept my acknowledgement of your (probably perfectly correct) criticism, and then let me tell you that it doesn’t matter in this scenario, because what Dave is REALLY DOING is letting people know that there finally is a network for reaching out and finding help and support when you are afraid.
I used to tell my sometimes cold, calculating, left-brained staff the following: “Hey, pretend this is YOUR DAD. It might be your 467th tumor, but it is this guy’s FIRST tumor.” In a society that denies that death is part of life; in a medical-industrial complex that denies that death is part of life; in a government that denies that death is part of life; it really is a shock when we discover our own mortality.
My suggestion? Don’t try to discredit Dave . . . try to be more sympathetic and caring for all of your patients. Dave is just trying to help.
Oh, yeah, and on the Facebook story. The mother said that one of her “friends” was someone (possibly a relative) who was a doctor. So, maybe Facebook did save her kid’s life because she was wired to a doc.
Social networking is here to stay. Look at the Middle East. We, as a civilization, are more connected now than we’ve been since the beginning of mankind, and we are not about to give it up to once again allow all the power to rest with one man, one profession or one country. Thanks for your comment. I feel better now.
It’s amazing to see what technology has done across the entirety of healthcare and these are just other examples of this. Technology isn’t simply for record keeping and diagnosis anymore. It’s inter-connectivity, education and understanding of others. Very interesting read.
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