The Idea Dude


Thursday, August 02, 2007

Wellocities, a journey and not a destination... part 3

The generation that is born into the digital age, the now-generation, questions everything. My friends and I share common experiences that when our children disagree with us, they counter our arguments by going to the Internet. Incapable of defending their points of view, they turn to Wikipedia, Google, blogs and forums to show us that we are wrong. It is so ingrained into their DNA that they do this without hesitation or forethought. For them, it is natural.

They understand better than us that opinion whether professional or not is not localized to one individual. They understand the power of the collective. They celebrate it.

I am surprised how different I am from them. I am after all from the then-generation. I assume the doctor is always right and the specialist is even more right. And when the news is bad, too often we feel there is no recourse. We never stop to ponder that these individuals are human after all, and like all of us, regardless of profession, can be extremely efficient in our sweet spots but are understandably inept at the fringes of our knowledge.

I was reminded of this when Dr Amol Deshpande from Wellocities shared the following story...

The journey starts with a woman diagnosed with breast cancer about 10-15 years ago. She was treated and did well.

About two years ago, she had the misfortune of being diagnosed with brain cancer.

She was found to be inoperable (not a surgical candidate) and was referred to a cancer-care centre for treatment. The first physician she met was unsympathetic, seeming to be more interested in treating patients that were suitable for their own clinical trial rather than searching for options to manage her cancer. She was told there was nothing else that could be done. She requested a transfer to another cancer-care centre.

The second physician she met was much more empathic. But, again she was told there was little that could be done. Her father, obviously distraught, used Google to search for different treatment options. He discovered an 'experimental' medication that was being used to treat his daughter's specific type of brain cancer and mentioned this to the patient and her sister. At her next appointment the patient discussed this new medication with the oncologist and was told that they were unfamiliar with this medication but nonetheless stated it was not available in Canada.

Her sister continued to ‘Google’ the medication and also contacted Health Canada who said the medication was NOT restricted but they had no idea how to obtain the drug.

Further searching on Google, revealed an experimental trial was taking place on the patient’s specific brain cancer in Alberta!! Unfortunately, the trial was on animals. The organization in Alberta had a website which also had a forum. The patient’s sister went online and shared her experience with a lady in Alberta who had the same type of brain cancer as her sister. She was told by the woman that the medication WAS available in Canada and that the only thing she needed from her doctor was a prescription. Just a simple prescription that’s all it took.

This journey is a true story.

Before you say that this was a case of malpractice consider that both physicians worked in large academic cancer centres.

Was the patient poorly educated? Actually, she’s a trained psychologist.

Was this an unusual situation? unfortunately not.

Now, what if that wasn’t any patient, but instead, it was your mother, your wife or your sister.

It is likely that we all know of stories about our friends or our families in similar predicaments. What Amol describes is not unusual for any city or any country. What he describes is the reality that we are not all-knowing and even with best efforts our knowledge on any topic is ultimately limited.

Amol's example shows how crowd-sourcing and mass-collaboration can take us out of local minima and find paths to solutions in unexpected ways. At TheGoodBlogs, I have seen many bloggers share their journeys, their experiences every day. I am struck by the generosity of the human heart.

Could Wellocities be the lens to that generosity, to find opportunities for cure and comfort? Even if, it was only to know that we are not alone, it is worth the price of participation.

In the final part of this series, I ask Amol to describe his vision of Wellocities and to tell us why his calling is now his passion.


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