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Comment by webwanderings | Hacker News Reader

Excerpt:

We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn't help them.

In the Big Data-era, this void is criminal. Consider what Wall Street does. Even the tiniest companies can see how much stock they sell, compare themselves to cohorts, review history, predict trends. Why can't we create such a database for cancer patients, so we can all learn from patient experiences and make more educated decisions on what treatments will extend and improve lives?

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Such work has begun: http://www.flatiron.com

Government regulation of how your personal information is created and stored makes such a database infeasibly difficult to create and maintain.

The regulation is good, in that it protects an individual's privacy from those who could harm them with it (for example, the insurance industry, the paparazzi, your employers), but it also harms initiatives which aim only for good. Unfortunately, we have to account for the worst actors when creating and regulating something.

This partly true, though HIPAA is more of a burden because of people's misunderstanding of it than what it actually mandates.

However, I posit that it is a lack of government regulation that has allowed health IT vendors to take no responsibility for supporting standards that enable data sharing across care settings. Every person in ill health deserves better study and care than we currently provide.

These problems are indeed well understood by some of us in healthcare, the details of a US 'Interoperability Roadmap' are available at the below link. Please take a moment to see where we are now, where we are headed, and how you might contribute.

http://www.healthit.gov/sites/default/files/nationwide-inter...

Does cancer occur in healthy ecosystems? Maybe big data & reductionism is an incomplete approach...

On the flip side, such techniques will make some people a lot of money, so ignore or downvote my concerns...

> Does cancer occur in healthy ecosystems?

Honestly, what does that even mean? And if you are trying to suggest that cancer is related to some imbalance in the environment, the answer is, yes, cancer occurs everywhere and anywhere. It is not limited to humans and did not start post-industrial Revolution.

Trying to extrapolate the origin math of a chaotic system is a fools errand.

Yes, cancer occurs in healthy ecosystems. The process of tumorgenesis has a lot of variables that we're still unwinding.

There is another cancer out there that is deadlier, and makes a lot of people a lot of money too through questionable means. It goes by names of holistic medicine and "questioning big medicine". It's a gang of the uninformed, led by charlatans and frauds preying on the sick and the dying, spewing their effluent without regard. It metastizes in communities of those looking for some sort of hope beyond hope, infecting these vulnerable communities. You, good sir, are that cancer. You, good sir, with your ignorance lead people to death with your ignorance. I hope, good sir, that you educate yourself, before you cause any more pain, suffering, and death.

I'm a programmer who eats healthy & practices yoga. I don't make money from cancer patients.

You are demonizing many techniques. Are you saying that there is only one way to medicine, and that is large drug companies & established professional organizations?

How do new practices & techniques get off the ground in such an environment? Is it possible to be healthy & treat disease independent of these companies in your opinion?

Also, where is the archeological evidence of cancer epidemics in ancient times?

Well, there are historical records of cancer, but it's a bigger problem now because people are getting old enough often enough to succumb to it, and it is being diagnosed as cancer and not as "dropsy" or who-knows-what in lieu of superficially visible tumors.

I think conventional medicine tends to be worth a lot of money because the treatments have been empirically proven to be effective.

I'm sure there are valid alternative medical treatments, but it tends to be that when they do turn out to be effective, the actual effective compounds or techniques are found and become conventional medicine, often also becoming far improved and made safer along the way.

The problem, of course, is that while valid alternative medicines exist, many aren't valid and are often just practiced to make money out of unsuspecting people...

I think there's a balance, and both naturopathic/holistic and traditional medicine are at both extremes.

Antibiotics and surgery are not the answer nor are lifestyle and spiritualism.

Live healthy, both emotionally and physically, to take care of the 90%, and seek treatment for the other 10% that truly call for it.

> I'm a programmer who eats healthy & practices yoga. I don't make money from cancer patients.

That is very noble of you and I read an implied hypothesis that the approach used by "large drug companies" and "established professional organizations" is worse than yours because their motives are less noble (e.g. companies want to make money, organizations want to further an agenda etc.), but a hypothesis alone is worthless if you cannot show evidence to prove it.

I give you that it would be hard to provide direct evidence for this hypothesis (neither companies nor organizations will be very helpful in providing information which could show that they lied for various reasons), so a good approach seems to be the indirect route: Show that your ideas work as well as the established ideas in a study following the established guidelines for scientific quality (double blind, big enough, and so on). Then you have shown that your hypothesis has merit and has a good chance of being sound advice.

So far, all we have are your believes, which is not very much when we talk about a topic that could very well change peoples lifes for worse (or better, but it is always a good idea to be cautious with unproved theories).

I'm not a practitioner so I'm not going to make any studies.

As far as the holistic crowd, many are artsy people, with a wide range of interests, who have little interest in creating scientific studies. They have to earn a living, which is often difficult. Yes, there is also quackery, though I suspect there are some nuggets of gold in these practices.

Among the scientists, it feels like there is a strong sentiment against such holistic practices & a perception that the practitioners are scammers. Judging from the reaction to me in this discussion, it would take a brave scientist to stick out his/her neck to spend years, money, & reputation to research such practices; when Bayer is offering a large grant to study their drugs.

There's an old IT saying, "Nobody got fired for using Microsoft". Wouldn't the same apply here?

> Also, where is the archeological evidence of cancer epidemics in ancient times?

Read "The Cancer Chronicles" - George Johnson for a really interesting few chapters on dinosaur cancer.

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