Some things are what they call “evergreen” – persistent value, never out of date. Two come together for this year-end post.
A lot’s changed since our society was formed in 2009, but year after year a core skill for participatory medicine is ability to think for ourselves (including providers) equipped with good information (which is distinctly not everything we read).
To do this we need critical thinking and good gadflies. Among the best are @GarySchwitzer of Health News Review (@HealthNewsRevu) and Gilles Frydman (@GFry), SPM co-founder and founder of the ACOR.org cancer patient network.
- Gary has posted his 3rd annual year-ender on health care PR crap we receive. You really need to read it – it’s concise, entertaining and disgusting, as Gary continues to be rightfully intolerant of the bullsh!t some “PR professionals” push out to the public, all in the name of shareholder value (i.e. their bosses’ income, regardless of impact on the public).
- Increasingly I’m thinking that a major source of doctors’ distrust of e-patients is unethical behavior by those PR people: they’re harming the potential of the patient engagement. Can’t we regulate them, make them knock it off? Profit is profit, but we’re not selling cars here; bogus information parroted by news outlets contributes to disastrously inefficient healthcare.
- Note: I’ve worked in marketing all my life. Not all PR is irresponsible. Gary and his team do a great job of analyzing articles every week, grading the good and the bad and explaining why, in terms any lay reader can understand.
- We learn from them. I learned so much from reading their work a few years ago that it’s second nature to me now. Subscribe to their blog (see “email digest” at bottom of site). (Free, courtesy of the Informed Medical Decisions Foundation!)
- In November 2009 here, Gilles posted Terrorized By The ‘War On Cancer’, an incisive analysis of the harm it does when we speak in such terms. (That’s why I put “arm” in quotes, in the subject.) The topic was the then-new guidelines for mammography screening. Remember the terrorized public uproar back then? Check how Gilles nailed it in the lead of his post:
In his original article about the war on terror [Zbigniew] Brzezinski argues that the use of the term War on Terror was intended to generate a culture of fear deliberately because it “obscures reason, intensifies emotions and makes it easier for demagogic politicians to mobilize the public on behalf of the policies they want to pursue”.
Following the release of new breast cancer screening recommendations we have just experienced an historical case of “moral panic” producing a never ending volley of denialism, distortions and abuse of expert clinical recommendations.
Gilles’s post generated dozens of meaty comments. For me the discussion was so eye-opening that I wrote a 1300-word comment(!). It’s reproduced below – notice how many of the topics are “evergreen,” 100% relevant today.
In 2013, please continue to participate here, and teach others in your community to think critically. And do subscribe, both to this blog and to Gary’s.
You may want to read Gilles’s original post. Here’s my comment back then:
Gilles, we can always count on you to cut to the heart of the issue, the deep-down issues. Thanks for this.
This is going to be a rambling reflection on the many thoughts this discussion evokes.
First, what does this have to do with being an e-patient? Everything. It’s increasingly clear that we can’t rely on the establishment (political leaders and news media) to interpret science correctly. Gilles lays out the evidence for that well. We must learn to interpret evidence for ourselves.
Second, let me say that I have not read the USPSTF’s specific recommendations. The instant I heard the public reaction I knew there was craziness in the air. I heard insanity: reactions to things that weren’t being said; hysteria. And I knew what I’d write about wouldn’t be a yes or a no, but how to approach such a consideration as an informed, engaged e-patient.
The purpose of using statistics
Gilles, thanks for tying this to our previous posts on understanding statistics. PLEASE, people, read last November’s short post on understanding statistics. And consider reading the excellent paper it links to.
Look at its incredible evidence that even physicians misinterpret statistics – the example on the second page is specifically about gynecologists being unable to correctly interpret mammography data, unless it’s presented quite clearly. The point isn’t that docs are dumb, it’s that misinterpreted statistics lead to confused, botched conclusions.
See, the purpose of statistics is to improve our guesses when we don’t have certainty. Use the tool correctly and it’ll help; use it wrong and it’ll drive you right off the road into a ditch.
Another example in that article is Rudy Giuliani’s ignorant, erroneous comparison of apples-and-oranges prostate screening data from the US and UK – data collected under different circumstances in different environments at different times in life. The reality is that prostate mortality is the same in the two countries, but Giuliani’s bogus logic led him to declare that [prostate treatment in] the US healthcare system works better than the UK’s.
Right: same mortality rate, but pick some arbitrary statistic and claim that it shows there’s a difference, even when the actual mortality rate is the same. Brilliant civic leadership.
REMEMBER, PEOPLE, THE PURPOSE OF STATISTICS IS TO IMPROVE OUR GUESSES. Actual outcomes outweigh interim statistics!
(Not to be outdone, in the UK, Tony Blair declared that his country was doing poorly and must improve 20%.)
STOP BEING IGNORANT. Don’t use a tool if you don’t know what it’s for!
In my annual physical today, Dr. Danny Sands and I again discussed whether I should get a PSA test (prostate cancer test). He first brought it up three years ago, and he (unlike many physicians) made clear that the PSA is notoriously unreliable: many false negatives, and many false positives that lead to unnecessary treatment. That’s the kind of advice I like: give me straight-up information about the pros and cons, and let me choose.
Every choice in life has risks.
You cannot evaluate doing something without also evaluating not doing it, and comparing.
See, “not screening” carries risks, as does screening itself.
Many articles have discussed that screening tests (a) cost money, (b) can lead to unnecessary treatment because of false positives, which (c) cost more money and (d) can cause harm.
It’s exactly the same as the UK birth control issue. The erroneous public reaction was caused by evaluating one arm of the choice and not comparing it with the other. Result: greater risk of clotting: a botched conclusion with medical consequences. You could call it statistical malpractice.
Just SHUT UP if you want to tell me “Don’t take away my tests!!” I didn’t say that. Don’t be insane, hearing things I didn’t say. That’s hysteria.
I’m not talking about the conclusion, I’m talking about how to make intelligent choices.
Who gets hurt? The patient.
In a comment on Gary Schwitzer’s excellent blog, I said what really upsets me in the mammography insanity is that (ironically!) it’s women who are put at increased risk by these misinterpretations: women who are left with less accurate advice.
In a similar way, the first case in that paper is about a 1995 UK scare caused by news that new birth control pills were causing a 100% increase in blood clots. True – but the reality was that they produce 2 clots per thousand women, vs. 1 for the old pills. Literally a one-in-a-thousand difference. But oh wow, that’s 100%! Headlines!
Here’s the consequence: Because of ignorant misinterpretation, massive numbers of women went off the pill, and in the following year …
- 13,000 more abortions were done in England and Wales
- 13,000 more births, including 800 under age 16
The special irony is that both abortion and pregnancy have higher rates of clotting than the pill itself. So the whole ignorant diversion was not only ill-considered, it worsened women’s health (while increasing abortions and births).
Doesn’t it irk you that the righteous protests about protecting women’s health, ignorantly considered, lead to bad advice?? These errors in interpreting science harm people.
The idiocy of asking celebrities their opinions
Whatever credibility our network news media had with me, they lost it when they trotted out ignorant celebrities to contribute to the misinformation campaign.
A new blog, the oddly named Celebrity Diagnosis, has chosen the mission of talking about health issues through the lens of celebrity discussions. They cite how dumb celebrities have been on this topic, particularly Jaclyn Smith saying “They want to abandon proven therapies. It’s wrong.”
Excuse me? Since when is a test a therapy? Jaclyn, is checking your pants the same as laundering them? Maybe that’s over your head. So shut the hell up on medical advice, willya?
But that’s what Gilles is talking about when he cites moral panic, which the Center for Media Literacy defines as “A sudden increase in public perception of the possible threat to societal values and interests because of exposure to media texts.”
And what better way to drive people to panic than fear of death?
But hold on; I’ve been there. Let’s think.
On the fear of cancer and death
When I learned on 1/22/07 that my median survival time was 24 weeks, it was NOT pleasant for me. “No. I am not done. Not ready to go.”
But after the abrupt shock, I found myself able to look it in the eye and think. What are my choices? Where do I start?
Twenty years ago I listened to tapes titled “Conscious Aging” and “Approaching Death” by Ram Dass, a spiritual teacher who was born Richard Alpert and who, in the sixties, wrote Be Here Now. After years in Tibet with gurus he worked with many dying people during the AIDS epidemic. (I’ve seen him speak, and believe me, when he entered the large hall, some sort of presence filled the room. Never seen anything like it.)
He speaks of death matter-of-factly, and his perspective aided my acceptance of what I was abruptly facing. I wasn’t interested in going through that door, but after a while I realized that if that’s what was happening, I could face it.
And that freed me to have authentic conversations with people about it, and with myself: I was able to choose my path with a clear mind.
I don’t diminish the concerns of people who face cancer and/or death – everyone’s trip is different. But throughout my cancer journal on CaringBridge.org I talked about the power of the words and concepts we use in discussing our world. I opted not to engage in discussion of “OMG!” and “How terrible!” I chose to think about “What are my options? What could be done that would make any difference?”
If we could all face death calmly I bet we’d be able to make much better choices in how we interpret evidence.
That’s why hysteria (Wikipedia: “unmanageable fear or emotional excess”) is so very, very harmful. When people lose their minds, perhaps because they’re told foolish misinterpretations of the evidence, what are the odds of reaching a sane conclusion?
Oh wait: we don’t have to ask the odds. This time we know.
Well done, Gilles. Obviously you touched a nerve.
This is both a public service and, given your own reflections on facing death, beautiful and inspiring.
One minor disagreement: I don’t think PR folks and others who make exaggerated claims get in the way of the e-patient movement at all except in a tangential way. As I wrote for our journal, we patients have had to fight for our rights every step of the way because of a paternalistic culture. An understandable one, to be sure, and one that is rightly concerned that some patients are a bit too confident about doing things on their own. But it is that culture that is our adversary.
The PR folks and the junk science people cause plenty of their own problems.
PS: I’m a fan of Gary’s from way-back-when.