We are going to get one million signatures on this petition, and present it to all governments, and change the relationship patients and their doctors have with medical research. Permanently.

First, watch Dr. Ben Goldacre here:
http://www.ted.com/talks/ben_goldacr....html?c=540521

Then read the petition and sign it here:
http://www.alltrials.net/

Then tell everyone you know.

There will be counter-attacks, so for those of you who want to go beyond signing the petition, this thread will provide more information and comment (from any member and any point-of-view, approval or disapproval, as always at Neurotalk), so that you have information if you need it, or simply want to be conversant with the controversy, which is going to shake the medical world. (The Inuit say, “It is not in hearing of a thing just one time, that you can know it. You must hear of it many times to see it.”)

This debate is HOT right now, especially in the U.K., and take note that Parkinson’s U.K. is right in the thick of it, as American PwP organizations should also be.

Pegleg launched the following discussion: (and she signed the petition) http://neurotalk.psychcentral.com/thread186565.html

Conductor 71 launched this discussion: (an on-going example of the broken relationship between patients and the medical industry): http://neurotalk.psychcentral.com/thread185520.html

The 4 links above are the central information; you don’t need more than that. But more is available, such as:

Dr. Ben Goldacre said this:
Medicine is broken. And I genuinely believe that if patients and the public ever fully understand what has been done to them – what doctors, academics and regulators have permitted – they will be angry. On this, only you can judge.

We like to imagine that medicine is based on evidence, and the results of fair tests. In reality, those tests are often profoundly flawed. We like to imagine that doctors are familiar with the research literature, when in reality much of it is hidden from them by drug companies. We like to imagine that doctors are well-educated, when in reality much of their education is funded by industry. We like to imagine that regulators only let effective drugs onto the market, when in reality they approve hopeless drugs, with data on side effects casually withheld from doctors and patients.

…the whole edifice of medicine is broken, because the evidence we use to make decisions is hopelessly and systematically distorted; and this is no small thing. Because in medicine, we doctors and patients use abstract data to make decisions in the very real world of flesh and blood. If those decisions are misguided, they can result in death, and suffering, and pain.

This isn’t a simple story of cartoonish evil, and there will be no conspiracy theories. Drug companies are not withholding the secret to curing cancer, nor are they killing us all with vaccines. Those kinds of stories have, at best, a poetic truth: we all know, intuitively, from the fragments we’ve picked up, that something is wrong in medicine. But most of us, doctors included, don’t know exactly what.

…The people you should have been able to trust to fix these problems have failed you…

Drugs are tested by the people who manufacture them, in poorly designed trials, on hopelessly small numbers of weird, unrepresentative patients, and analysed using techniques which are flawed by design, in such a way that they exaggerate the benefits of treatments. Unsurprisingly, these trials tend to produce results that favour the manufacturer. When trials throw up results that companies don’t like, they can hide them from doctors and patients, so we only ever see a distorted picture of any drug’s true effects. Regulators see most of the trial data, but only from early on in its life, and even then they don’t give this data to doctors or patients, or even to other parts of government. This distorted evidence is then communicated and applied in a distorted fashion. In their forty years of practice after leaving medical school, doctors hear about what works through ad hoc oral traditions, from sales reps, colleagues or journals. But those colleagues can be in the pay of drug companies – often undisclosed – and the journals are too. And so are the patient groups. And finally, academic papers, which everyone thinks of as objective, are often covertly planned and written by people who work directly for the companies, without disclosure. Sometimes whole academic journals are even owned outright by one drug company.

Aside from all this, for several of the most important and enduring problems in medicine, we have no idea what the best treatment is, because it’s not in anyone’s financial interest to conduct any trials at all. These are ongoing problems, and although people have claimed to fix many of them, for the most part, they have failed; so all these problems persist, but worse than ever, because now people can pretend that everything is fine after all.

….it’s possible for good people, in perversely designed systems, to casually perpetrate acts of great harm on strangers, sometimes without ever realising it. The current regulations – for companies, doctors and researchers – create perverse incentives; and we’ll have better luck fixing those broken systems than we will ever have trying to rid the world of avarice.

…Today, when an academic or doctor tells you that they are working for the pharmaceutical industry, they often do so with a look of quiet embarrassment. I want to work towards a world where doctors and academics can feel actively optimistic about collaborating with industry, to make better treatments and better patients. This will require big changes, and some of them have been a very long time coming.

…The true scale of this murderous disaster only fully reveals itself when the details are untangled. Good science has been perverted on an industrial scale, but this has happened slowly, and evolved naturally, over time. This has all been perpetrated by ordinary people, but many of them may not even know what they’ve done.

I want you to find them, and tell them.

Dr. Ben Goldacre: from the Intro to his book “Bad Pharma: How drug companies mislead doctors and harm patients”. (posted with permission)