Information is power. I'm all for patient networks - support groups are crucial for helping patients help themselves. I agree patients are an underutilized resource in health care.
The speech strikes me as adversarial, however (give me my damn data..,) when we should be striving for doctor-patient collaboration.
I'm also troubled with parts of the speech suggesting ignorance and conspiracy on the part of the medical profession. Such as,
Most hospitals don't offer it so they won't even tell you it exists...don't let them give you anything else first...Four years later, you can't find a website that gives you that information...this amazing substance...
Many of the comments on the TED page suggest the same. This jaded view (plus one terrible doctor) were behind the empowered-patient-led anti-vaccine movement which set back public health a great deal.
I'm doubtful that any oncologist in the US was unaware of Interleukin for RCC in 2006. Also doubtful that oncologists would keep it secret from a patient. I just googled and found it everywhere.
I would love to know how common or rare Mr deBronkart's result is - is the Interleukin amazing for many or for few? Useless or even tragic for the rest? Miracle cures are usually a miracle for very few, while anecdotes carry great persuasive power.
As many faults as our health care system has, I believe that promoting distrust (You people can't be trusted to keep [my data] clean) on TED of all places, is a disservice to provider-patient relationships and to public health.
Let's cooperate, please, for the greater common good.
Added 2 AM July 8:
To be clear, I believe his frustrations with our system are common and well-founded. My concern is the speech demonizes not a system but 'they' and 'you'. 'They' and 'you' are people trying to help him.
I nevertheless praise the lecture as inspiration for patient self-advocacy. Clearly most listeners took it as such.