epatientDave-Dave deBronkart: an e-patient like no other
In my previous post good bye old economy, welcome economy created by people participating in flows of information! , the title of which is borrowed from a post of @epatientDave with the same title, I wrote about a story between my good friend, Dave de Bronkart, @epatientDave, as many of you know him.
I have written or quoted more than once Dave deBronkart in this blog but I have not till now written much about him, who he is and how we happened to get to know each other, living in completely different parts of the world. Dave deBronkart is an American gentleman, whose existence I completely ignored till mid-year 2009, when I landed on the website www.e-patients.net, that is the blog of the Society of Participatory Medicine.
I was impressd by the posts on this blog that were speaking about a new model of healthcare that I had already envisioned, since my second pregnancy in the 80s. The pregnancy was not an easy one and it went well, because I had an excellent obstetrician, late Dr. George Giannakodimos, who practised participatory medicine, without knowing it, as I can see it today… He was happy to answer my many questions and comment on the articles from medical journals about my condition, I was bringing along during my medical visits. Unfortunately, he left this world very early…
When I read the White Paper, e-Patients:How They Can Help Us Heal Healthcare , it was an a!ha! moment for me, because I found spelled out the principles of health care I had envisioned…We discussed about it and the concepts it introduced with my friend, Nikos Papachristos (@ehealthgr) during long telephone calls and decided to translate it in Greek…
I was trying to get a contact address for @epatientDave, when I found him on Facebook. We exchanged a few posts on Facebook, then emails in which I asked him for his advice on whom I should contact, for an authorization to translate the White Paper into Greek …Dave, said there would be no problem and that I could go ahead.. Something, I did but the translation has not progressed further than page 20, as life circumstances did not let much time for concentrating on the translation….The story of the White Paper translation in Greek does not stop here, of course, but it’s another story which I will write in a separate post….
So this is how I made the virtual acquaintance of @epatientDave. We exchanged tweets and posts on Facebook, emails, comments on his posts on www.e-patients.net. In December 2010, I was accepted as Fellow to the Health II series session of the Salzburg Global Seminar. I arrived at Schloss Leopoldskron in Salzburg, mid-day on the day before the start of the session…
In the premises, I came across a man that reminded me something, and was wondering in which international conference we had met before…
Then, I had a flash: I remembered where I had seen his face: on twittter! and unmistakeably, he should be @epatientDave! He was making the same kind of thinking: where he had seen me before!
We introduced ourselves and that was it! We liked very much what we found in the real person we had in front of us. This means that our avatars and what we said in social media corresponded with the impression the real person made. Since then, we have become good friends. Dave is the most incredible, educated, intelligent, proactive and energetic patient advocate I have met so far. And for reason, he is internationally recognized as the leader of the e-patient movement.
For those who do not know him yet, Dave is a cancer survivor of the most deadly cancer, renal cancer. He was diagnosed in 2007 with Stage IV kidney cancer with multiple metastases, with a median survival of just 24 weeks. He used extensively the internet in every way possible to find where he could be treated and to partner with his care team and beat this unbeatable disease.
After his therapy in 2008, he abandoned his job as an IT executive
to become 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 tur
n will impact insurance, careers/jobs, quality of life and the distribution of finances across the entire spectrum of health care.
So, cancer led Dave to a new career of patient advocate for participatory medicine in which he thrives as writer, blogger and speaker of international acclaim. Just watch his viral TED presentation “Let Patients Help» at TEDxMaastricht with the 396.000 views!
Besides being a prolific blogger, he is also a no non-sense writer. He has published «Laugh, Sing and Eat like a Pig» .a book of hope, courage, advice and compassion in which he narrates his battle with renal cancer, how he was helped by fellow patients online to find and contact the specialist oncologists and select a hospital, his incredibly difficult and painful therapy, and how he was happy at the end to be present at his daughter marriage.
If you wonder what the peculiar title of his book is about, you may read his own explanation:
- “Laugh” is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness as Perceived by the Patient
- “Sing” is the advice my doctor gave. I had asked if I should drop out of my much-loved championship chorus to save energy, but he said, “You don’t want to stop doing life activities that you love – it sends the wrong message.” Wow. So, okay, laugh and sing! Not bad.
- “Eat like a pig” refers to the diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.
This is a very short overview of what this terrific e-patient is doing and of course, I have not mentioned all of his various activities, that he is invited and sits in a number of US health care policy committees, that he is a former Director and a member of the founders circle of the Society of Participatory Medicine, that he is a TED keynote speaker, that he is also an educator through his terrific Patients BootCamp project, already tried with great success in The Netherlands and New York.
I would like to mention here that I have tried twice to bring the Patients BootCamp project to Athens but I hope that the third one will be the successful one, as the circumstances change very quickly in Greece during the last two years….
If Greek patients knew about it they would be the first to ask medical conference organizers to substitute the usually dull patient seminars with this exciting method of learning about health care, engaging with other patients and health care providers, taking responsible care of one’s health, using expertly the internet and social media in health care…..It’s a seminar about changing health care, reshaping health care and it is the patients who can trigger it…