Julia Schopick, patient advocate and tell-it-like-it-is author, exposes a lack of objectivity in her three part series about research that gets published without disclosure.
We patients are bombarded with news and information every day about health and medical research results. The points Julia makes can affect the care we receive, so it’s important for us patients to know when to question the information we are presented with.
Julia’s first exposé is of VNRs (Video News Releases) that are showcased by TV and radio stations all over the country as if they are news when, in fact, that are the product of a medical organization’s PR department. I’ve blogged about them before. They do raise that question: is the information we patients receive ‘real’ information? Or is it simply marketing? There is a huge difference!!
Hmmm… perhaps VNRs should have their names changed to VPPs: Video Promotion Packages.
Truth is — I can see the various “sides” in all this. I worked in marketing for 20+ years — so I can see how VNRs are a good marketing tool. From the marketing department’s point-of-view, as long as you can find media outlets willing to use them, well why not? From the point of view of the media outlet, they are easy content. No cost, and no effort. Good fillers. Cheap and easy will always win out.
Where does that leave us patients? What it tells us is this: don’t believe everything you read, see or hear. Always look behind the headlines.
Julia’s second example of non-disclosure takes on the venerable Journal of the American Medical Association (JAMA), perhaps the most respected medical journal in the world. She points to the Wall Street Journal articles written by David Armstrong in 2006. It exposed that the authors of JAMA published research results, had in fact been subsidized by the pharmaceutical companies that benefited by the research. Questions about objectivity arose, as they should.
If the scientists were paid to do the research with expected outcomes, can their research be considered objective? And if it’s not objective, can we patients and our doctors trust their results? If researchers are bucking the system and not disclosing conflicts of interest, then how can we believe any of their results?
The problem here is not whether the research should take place, however. It’s a problem of disclosure. It’s the problem of lying on behalf of those involved in the research. Supposedly JAMA expects disclosure — but the doctor-researchers ignored the requirement. Why would they want to raise eyebrows?
It takes no rocket or medical science to know that biting the hand that feeds you causes you to go hungry. But again, I see the various “sides” in this. Research is expensive, and so is testing it. Somebody’s got to pay for it, and with no stake in its outcome, why would someone else pay for it? And, as patients and consumers, we demand new and better treatments for our medical problems, so we want the research to take place so we have more options, right? Besides, all those researchers have mortgages, too.
A different kind of scientific testing, but an example I can share from my own experience that points out problems in disclosure… I believe my own misdiagnosis was partially a result of a similar situation. The lump removed from my torso was tested in one pathology lab with inconclusive results. My medical record says “suspicious for” with a notation that the biopsy was being forwarded to a second lab. The second lab’s record says “most consistent with” — and from there the oncologist ran with the ball, trying to convince me I had cancer.
However — after I figured out I’d been misdiagnosed, I went back to the directors of both those labs. What I learned is that any specimin sent to a second lab MUST contain the findings of the first lab. “This is what we think it is. What do you think it is?” That means in my case that lab #2 already knew what results had been found by lab #1 — so how could they look at it objectively ? They couldn’t. No objectivity there. Just one lab confirming another. Nothing scientific, for sure.
Who wrote that rule? The rule that says a lab must disclose its findings even though what they want is an objective second opinion? Some lazy pathologists who don’t want to work so hard to arrive at answers themselves? Behold Trisha Torrey — the victim of non-objectivity. Yes, I have a few opinions about that.
As sharp patients, it’s up to us to ask questions all the time. Always look behind the information to determine objectivity. Make sure the information is not being twisted or shaped by someone who is either too lazy or can somehow derive income by you thinking one thing when, in fact, your health would be better supported by something else.
If it walks like a duck and quacks like a duck, don’t let anyone tell you its a goose. It’s likely they’ve been subsidized by geese and won’t have disclosed one word about geese at all.
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