Wednesday, August 16, 2006

Wisdom of the Crowds

This is the title of a book which proposes that a large group of people have a collective wisdom that beats individual professionals or experts in any given field. I found this to be the case in my search for the best cancer treatment I can find here in Singapore. I’ve trolled the Internet for information. I’ve amassed a library of books on cancer, treatment, diet, exercise, and alternative therapies.

I’ve met with 16 doctors in Singapore and the U.S. I’ve consulted via e-mail with several more. I’ve talked to numerous fellow cancer patients and survivors. And after taking in all this information, I’ve come up with my own conclusions. This is the biggest research project I’ve ever taken on. And the reward for my research work won’t be a grade in school or a promotion at work. If I do a good job, it will mean I get to live a little longer.

I’ve learned from my experience with the mysterious bleeding in my chest a few months ago that I can’t just leave my treatment up to the doctors. None of my doctors were sure of what needed to be done, so I finally had to take control and find a solution -- in this case, a fourth doctor to weigh in his opinion. Then I made my decision based on my doctors’ various opinions, plus the information I found on the Internet.

I think it can be scary for a patient to take this much responsibility for her own treatment. If I leave every decision to the doctors, and something goes wrong, I can just blame them. If I make the decisions and something goes wrong, I have no one to blame but myself. But since it’s my life and I have only one of these, the stakes are quite high for me. For doctors, it’s somebody else’s life and they have lots of these cases to handle, so the investment is not as great.

It’s the simple reality that doctors have the tools but not the vested interest, while patients have a huge investment, without the tools. But with the Internet and the sheer volumes of information available out there, patients can have some of the tools, at least enough to question doctors and work with them in finding the best treatment. I’ll bet the Internet has done wonders to improve patient care, at least in the U.S. Evidently, not in Singapore yet.

Now I find myself in the curious position of being somebody else’s advisor. I went for my routine Herceptin treatment today and ran into a fellow patient who has been referring to me as “Dr. Shin”. She’s been asking my advice about the swelling in her arm and her discomfort with the catheter for her chemo treatments. I was surprised that the advice I had to give her hadn’t been provided by her own doctors -- e.g. arm massage and exercises for swelling, the chemo port option instead of the catheter.

So now I find myself worrying that other patients aren’t getting the best care they can, simply because they don’t have all the information they need to make decisions about their treatment. I need to do something about this.

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