It’s terrific that so many members of the Society for Participatory Medicine are contributing guest posts that share their e-patient story or how they came to know and care about participatory medicine. This one, by Akiva Zablocki (@iPatchMan), is extraordinary, both for his story and for how he’s conjuring up an initiative – a manifesto. From his blog, Health2Social.com:
On May 30th 2008, a dozen brain tumor experts from over six different medical centers convened in Boston to discuss one patient’s treatment options. The patient, a 76 year-old man, had been diagnosed with a Glioblastoma Multiforme brain tumor, the “most common and most aggressive malignant primary brain tumor in humans.” What was astonishing here, according to NY Times writer Laurence Altman, was this man’s ability “to summon noted consultants to learn about the latest therapy and research findings” – despite this being the most common brain tumor that has a relatively set course of treatment.
This man was able to solicit advice that anyone else diagnosed with incurable cancer could only dream of.
How did he achieve this? Well, this man was Edward Moore Kennedy – to his friends, “Ted.”
As the NY Times stated: “the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee” was extraordinary. This meeting led to Ted Kennedy changing his treatment plan from what Harvard’s prestigious Massachusetts General Hospital advised and opting to have surgery at Duke instead. Kennedy’s ability to seek out more opinions from the leading experts in the field is what led him to extend his life by 15 more months and live long enough to vote for the healthcare reform law he worked half his life to bring about.
When I read this article back in 2008, I was surprised to discover that I knew several of the experts that Kennedy consulted. In fact, I too had reached out to them to get advice on my “inoperable” brain tumor in 2005. While not rich, famous or politically powerful, I was nonetheless resourceful and sought to make the most informed decision possible before starting treatment. After all, if one were to buy a new car, they would probably go online and read dozens of reviews about the cars they were considering. They would probably talk to different people who owned those cars and get their first-hand experience. They would then go to several dealerships and test drive the cars they liked, and, only after all that, would they buy a car. However, for some inexplicable reason, when we are faced with a dire illness and need to make a choice about saving our lives, we are expected to settle for one second opinion? Ted Kennedy did not settle for that and neither should anyone!
Around the same time, another rich and famous person was diagnosed with pancreatic cancer and wanted to do everything he could to stay alive. This man had brought us the iPad and the iPhone and he had the ability to convene the “expert panel” he needed to make his decision on a treatment choice. Once again, a person’s ability to properly face a cancer diagnoses was correlated to his status in society. If Joe Schmo wanted to have a call with the same 12 experts he would be looked at like a crazy person.
Even getting access to reviews of treatments online is difficult. If you Google “iPhone 4s Reviews” you receive over 373,000 results full of reviews of the new gadget. You can find Consumer Reports, YouTube clips and experts all over the world advising you to buy or not buy. But if you Google “stereotactic radiosurgery review” you get only 2,240 hits, none of which will actually help you make your decision.
In a recent NY Times article discussing the lack of online reviews for doctors, the author quotes a spokesman for the American Medical Association as saying, “Anonymous online opinions of physicians should be taken with a grain of salt and should not be a patient’s sole source of information when looking for a new physician.” The author also quotes the manager of a review site saying that doctors have told her that “patients aren’t smart enough to figure out whether I’m a good doctor.” With this being the approach of the mainstream medical providers it is not hard to see why only the rich and famous can get the best possible advice from multiple sources.
This situation is simply unacceptable. Everyone and anyone should have full access to a system that allows them to make the best informed decision before consuming healthcare, especially when it is medical care that is needed to save one’s life.
There are many organizations approaching the information problem, as it is goes beyond the issue of informed treatment decisions. ClearHealthCosts is trying to bring more transparency to the prices of healthcare while FairCareMD aims at allowing consumers and provider of health to agree on a fair price for treatment. And of course, Health2Social is determined to help people get to the best care they need and make the best informed decision when choosing a treatment course.
Look out for our next post, titled “The Informed Patient: A Manifesto.” This Manifesto will list the steps and conditions that will lead to everyone having access to the same decision making support Ted Kennedy and Steve Jobs had, and, at the very least, the same that I had, which ultimately saved my life.
What do you think should be included in The Informed Patient: A Manifesto? Leave us a comment and share your voice!
Thanks for sharing this Aki,
It’s amazing how much more informed we are when we consult those with expertise from all levels, seeking advice that falls outside the initial medical “experts” soon when we’re diagnosed with illnesses or seemingly incurable problems.
It’s up to the us as patients to determine who we believe should be on the “expert panel” in question. By all means, secure second, third, and more opinions to make the most informed decisions possible.
Jean-Michel
Amen to every word of that. Same thing I’ve been saying – in my book, in my presentations, in my blog(s), pretty much everywhere/always – for … years.
The good news is that smart doctors are listening. The bad news is that there are still miles to go on this journey. I’m speaking at grand rounds at Walter Reed this week, and part of my message will be – oh, c’mon, you can guess, right?
I’m coaching a family member right now who’s dealing with a benign, but in his surgeon’s words “massive”, meningioma – since he’s a savvy guy with a very analytic mind, he’s taking to self-advocacy like a duck to water.
Patients get it. We need to teach doctors how to get it. Only then will healthcare be truly reformed.
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