This week the Canadian Cancer Society (CCS) released Canadian
Cancer Statistics 2013. Here is the
big picture, “Almost half of all Canadians (41% of females and 46% of males)
will develop cancer in their lifetime and a quarter of all Canadians are
expected to die of the disease.”
How do we defend ourselves against these statistics? Can access to our personal health information
help us to live longer? If epatient Dave is an example the answer is
YES!
“e-Patient Dave” deBronkart was diagnosed in January 2007
with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late
stage. His 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
web site described it. His doctors had
advised him to get his affairs in order.
Dave had another idea.
He asked for his records and researched treatments and
options online, and he consulted with cancer survivors. 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. That was six years
ago.
Dave is now a renowned speaker for the #epatient movement, you
can watch his inspirational TED
Talk and follow him on Twitter for emerging dialogues related to “patients
rising’. Like so many rights activists
before him, it must have taken great courage to be that lone voice in the
wilderness, working against the healthcare system to get control of his data to
try to save his life. But as a rights based campaign, the fight to control and manage our personal health
information is not getting traction among the masses. We are failing to build an
‘occupy’ movement.
Consider this, if Dave is not an anomaly (and I don’t believe he is), what
impact could empowered patients have on the Canadian
Cancer Society statistics released this week?
If only 1% of patients were able to achieve the results that Dave did
(six more years of life), that would be 755 lives saved this year alone (CCS
estimates 75,500 Canadians will die from cancer this year). That is more than the number of homicides in
a given year (2011 there were 598 homicides in Canada). For our neighbours to the south, who share
similar statistics (but with 10 times the population), my rudimentary math
skills estimate the impact on your population to be 7,550 lives saved (and you have mandated PHRs about to come into force next year).
Why are we as healthcare consumers, not demanding to be more engaged in our
healthcare decisions? Why aren’t we mad
as hell about the lack of access we have to our healthcare data; data that
legally belongs to us.
When Dave deBronkart exclaimed “give me my damn data”, he was attempting to correct an injustice, his inability to access his health information in order to become a partner in his care. Legally, the information belonged to him, what he was able to do with that is a lesson for all of us. Think of what might have happened if Dave had grown up with access to his health information. Perhaps his health history may have motivated Dave to advocate for a diagnostic test or to research his genetic predisposition.
Our right to manage our personal health information is not
just about improving our ability to respond to a serious diagnosis, the
benefits will include improving our ability to prevent chronic illness in the
first place. If we could showcase the
potential years of life we add when we embrace healthy lifestyle decisions, maybe
then we would start to see some interest.
John Nosta wrote a great piece in Forbes last week that
everyone working in this area should print, keep handy and use in ongoing
discussions. He boils down the
constantly expanding concept of ‘digital health’ to one clean understandable metaphor;
digital
health is a check engine light for your body. This is what the epatient movement needs, a
clear message to take to the masses. A
message that can be attached to the compelling stories like Dave’s. A message that will inspire people to declare
“Gimme my damn data!”
It’s your health. It’s
your health information. Manage it
well.
