Update January 2011: Be sure to read the comments, which have links to many valuable resources.

This item today, from MedPage, underscores the importance of having our eyes open about the human frailties in the research process that our lives can depend on.

ORLANDO, Feb. 27 — Newly unsealed court documents suggest that AstraZeneca tried to minimize the risk of diabetes and weight gain associated with its antipsychotic drug quetiapine (Seroquel), in part by “cherry-picking” data for publication. … lawsuits by some 9,000 people who claim to have developed diabetes while taking the drug. … a 1999 e-mail indicating that the company had “buried” three clinical trials and was considering doing so with a fourth. … Another … discussed ways to “minimize” and “put a positive spin” on safety data from a “cursed” study — one of those later described as “buried.”

As patients become empowered and active participants in their care, they/we need to learn how to understand the limitations of published research. I’m writing this not to rant about corruption, though such a rant might be considered justified; I’m writing it to teach. Consider what there is to learn:

Why you should care: It’s important for us patients to understand this as we take a more active, informed, empowered, participating role in making our care decisions, including which drugs we accept:

  • In the past few months the e-patient blog has written several times about understanding statistics
  • Last fall on my own blog I wrote about the pros and cons of evidence-based medicine
  • For your safety – your parents’ safety, your children’s safety – drug makers are required to do research before releasing a drug, and tell what they found. This process is subject to human frailties.
  • Recently this blog has reported on the substantial conflicts of interest attached to some journal articles. Since those same journal articles are widely considered the gold standard of reliable evidence, we need to be aware that there can be limitations to that reliability.

Business Week seems to consider it a business problem:

How much internal information can a company be forced to make public simply because it has become a defendant in a lawsuit?

Simply because, huh?

Here’s a question to ask yourself: if you want to know the best possible information about a drug, where do you go?

My guess is that our ability to know what we can trust (and to protect ourselves) will improve when patients routinely go online to share their experiences and routinely go online to check what others have said.

Who else can we trust? I mean, we’re talking about putting potent chemicals into our system, and evidently it’s sometimes “optimized” for revenue, with people willfully hiding warnings from us.

I went to PeoplesPharmacy.com, a web site run by e-patient working group members Joe and Terry Graedon, and searched for the drug’s name. Look what I found in the top article:

It’s no wonder that patients and families are nervous about these medicines, especially when you consider that they can cause other complications such as dramatic weight gain, diabetes, strokes and irregular heart rhythms.

A 2005 article there didn’t talk about those issues but had a warning that the cost might not be worth it:

A new study demonstrates, however, that the more recent drugs are not much of an advance.

We need to share our experiences more often. Think about it: 9,000 people allege harm, yet the PeoplesPharmacy article only noted that risk this month. Not enough of us spread the word soon enough.

Let’s spread the word to each other: let’s do our own research, and for heaven’s sake let’s post our experiences online for others to discover.

ACOR founder Gilles Frydman has numerous stories of benefits of cancer patients sharing drug experiences, good and bad. I’ll ask him to respond with more in the comments here.

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