{"id":13969,"date":"2012-12-31T13:27:13","date_gmt":"2012-12-31T18:27:13","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=13969"},"modified":"2012-12-31T13:27:56","modified_gmt":"2012-12-31T18:27:56","slug":"arming-ourselves-with-information-revisiting-our-2009-war-on-cancer-post","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/12\/arming-ourselves-with-information-revisiting-our-2009-war-on-cancer-post.html","title":{"rendered":"&#8220;Arm&#8221; ourselves with information: Health News Review and 2009&#8217;s &#8220;war on cancer&#8221; post"},"content":{"rendered":"<p>Some things are what they call &#8220;evergreen&#8221; &#8211; persistent value, never out of date. Two come together for this year-end post.<br \/>\n__________<\/p>\n<p>A lot&#8217;s changed since <a href=\"http:\/\/participatorymedicine.org\" target=\"_blank\">our society<\/a> was formed in 2009, but year after year a core skill for participatory medicine is\u00a0<strong>ability to think for ourselves<\/strong> (including providers)\u00a0<strong>equipped with good information<\/strong> (which is distinctly <em>not <\/em>everything we read).<\/p>\n<p>To do this we need <strong>critical thinking <\/strong>and <strong>good gadflies<\/strong>.\u00a0Among the best are <a href=\"http:\/\/twitter.com\/garyschwitzer\" target=\"_blank\">@GarySchwitzer<\/a> of <a href=\"http:\/\/HealthNewsReview.org\" target=\"_blank\">Health News Review<\/a>\u00a0(<a href=\"http:\/\/twitter.com\/HealthNewsRevu\" target=\"_blank\">@HealthNewsRevu<\/a>) and Gilles Frydman (<a href=\"http:\/\/twitter.com\/GFry\" target=\"_blank\">@GFry<\/a>), SPM co-founder and founder of the <a href=\"http:\/\/ACOR.org\" target=\"_blank\">ACOR.org<\/a> cancer patient network.<\/p>\n<ul>\n<li>Gary has posted his\u00a0<a href=\"http:\/\/www.healthnewsreview.org\/2012\/12\/3rd-annual-year-ender-on-health-care-pr-crap-we-receive\/\" target=\"_blank\">3rd annual year-ender on health care PR crap we receive<\/a>.\u00a0You really need to read it &#8211; it&#8217;s concise, entertaining and disgusting, as Gary continues to be rightfully intolerant of the bullsh!t some &#8220;PR professionals&#8221; push out to the public, all in the name of shareholder value (i.e. their bosses&#8217; income, regardless of impact on the public).<!--more--><\/li>\n<ul>\n<li>Increasingly I&#8217;m thinking that a major source of doctors&#8217; distrust of e-patients is <strong>unethical behavior by those PR people<\/strong>: they&#8217;re harming the potential of the patient engagement. <strong>Can&#8217;t we regulate them, make them knock it off?<\/strong>\u00a0Profit is profit, but we&#8217;re not selling cars here; bogus information parroted by news outlets contributes to disastrously inefficient healthcare.<\/li>\n<li>Note: I&#8217;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 <strong><em>and explaining why<\/em>,<\/strong> in terms any lay reader can understand.<\/li>\n<li><strong>We learn from them.\u00a0<\/strong>I learned so much from reading their work a few years ago that it&#8217;s second nature to me now. Subscribe to their blog (see &#8220;email digest&#8221; at bottom of site). (Free, courtesy of the <a href=\"http:\/\/informedmedicaldecisions.org\/\" target=\"_blank\">Informed Medical Decisions Foundation<\/a>!)<\/li>\n<\/ul>\n<li>In November 2009 here, Gilles posted\u00a0<a title=\"Permanent Link to Terrorized By The \u2018War On Cancer\u2019\" href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2009\/11\/terrorized-by-the-war-on-cancer.html\" rel=\"bookmark\">Terrorized By The \u2018War On Cancer\u2019<\/a>, an incisive analysis of the harm it does when we speak in such terms. (That&#8217;s why I put &#8220;arm&#8221; 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:<\/li>\n<\/ul>\n<blockquote><p>In his original <a href=\"http:\/\/www.washingtonpost.com\/wp-dyn\/content\/article\/2007\/03\/23\/AR2007032301613.html\" target=\"_blank\">article<\/a> about the war on terror [Zbigniew] Brzezinski argues that the use of the term\u00a0War on Terror was intended to generate a culture of fear deliberately because it \u201cobscures reason, intensifies emotions and makes it easier for demagogic politicians to mobilize the public on behalf of the policies they want to pursue\u201d.<\/p>\n<p>Following the release of new\u00a0<a href=\"http:\/\/www.ahrq.gov\/clinic\/uspstf09\/breastcancer\/brcanrs.htm\" target=\"_blank\">breast cancer screening recommendations<\/a>\u00a0we\u00a0\u00a0have just experienced an historical case of \u201c<a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2009\/11\/terrorized-by-the-war-on-cancer.html#moral_panic\">moral panic<\/a>\u201d producing a never ending volley of denialism, distortions and abuse of expert clinical recommendations.<\/p><\/blockquote>\n<p>Gilles&#8217;s post generated dozens of meaty comments. For me the discussion was so eye-opening that I wrote a 1300-word comment(!). It&#8217;s reproduced below &#8211; notice how many of the topics are &#8220;evergreen,&#8221; 100% relevant today.<\/p>\n<p>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&#8217;s.<br \/>\n________________<\/p>\n<p><em>You may want to read <a title=\"Permanent Link to Terrorized By The \u2018War On Cancer\u2019\" href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2009\/11\/terrorized-by-the-war-on-cancer.html\" rel=\"bookmark\">Gilles&#8217;s original post<\/a>. Here&#8217;s\u00a0<em>my comment back then:<\/em><\/em><\/p>\n<p>Gilles, we can always count on you to cut to the heart of the issue, the deep-down issues. Thanks for this.<\/p>\n<p>This is going to be a rambling reflection on the many thoughts this discussion evokes.<\/p>\n<p>First, <strong>what does this have to do with being an e-patient? Everything.<\/strong> It&#8217;s\u00a0increasingly clear that we can&#8217;t rely on the establishment (political leaders and news media) to interpret science correctly. Gilles lays out the evidence for that well. <strong>We must learn to interpret evidence for ourselves.<\/strong><\/p>\n<p>Second, let me say that I have not read the USPSTF&#8217;s specific recommendations. The <em>instant<\/em> I heard the public reaction I knew there was craziness in the air. I heard insanity: reactions to things that weren&#8217;t being said; hysteria. And I knew what I&#8217;d write about wouldn&#8217;t be a yes or a no, but <strong>how to approach such a consideration<\/strong> as an informed, engaged e-patient.<\/p>\n<h3>The purpose of using statistics<\/h3>\n<p>Gilles, thanks for tying this to our previous posts on understanding statistics. PLEASE, people, read <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2008\/11\/making-sense-of-health-statistics.html\" rel=\"nofollow\" target=\"epd\">last November&#8217;s short post<\/a> on understanding statistics. And consider reading the excellent <a href=\"http:\/\/www.psychologicalscience.org\/journals\/pspi\/pspi_8_2_article.pdf\" rel=\"nofollow\" target=\"epd\">paper it links to<\/a>.<\/p>\n<p>Look at its incredible evidence that <strong><em>even physicians<\/em> misinterpret statistics<\/strong> &#8211; the example on the second page is specifically about <em>gynecologists<\/em> being unable to correctly interpret mammography data, unless it&#8217;s presented quite clearly. The point isn&#8217;t that docs are dumb, it&#8217;s that misinterpreted statistics lead to confused, botched conclusions.<\/p>\n<p>See, <strong>the purpose of statistics is to improve our guesses when we don&#8217;t have certainty.<\/strong> Use the tool correctly and it&#8217;ll help; use it wrong and it&#8217;ll drive you right off the road into a ditch.<\/p>\n<p>Another example in that article is Rudy Giuliani&#8217;s ignorant, erroneous comparison of apples-and-oranges prostate screening data from the US and UK &#8211; data collected under different circumstances in different environments at different times in life. <strong>The reality<\/strong> is that <strong>prostate mortality is the same<\/strong> in the two countries, but Giuliani&#8217;s bogus logic led him to declare that [prostate treatment in] the US healthcare system works better than the UK&#8217;s.<\/p>\n<p>Right: same mortality rate, but pick some arbitrary statistic and claim that <em>it<\/em> shows there&#8217;s a difference, even when the actual mortality rate is the same. Brilliant civic leadership.<\/p>\n<p>REMEMBER, PEOPLE, THE PURPOSE OF STATISTICS IS TO IMPROVE OUR GUESSES. <strong>Actual outcomes outweigh interim statistics!<\/strong><\/p>\n<p>(Not to be outdone, in the UK, Tony Blair declared that his country was doing poorly and must improve 20%.)<\/p>\n<p><strong>STOP BEING IGNORANT. Don&#8217;t use a tool if you don&#8217;t know what it&#8217;s for!<\/strong><\/p>\n<p>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&#8217;s the kind of advice I like: give me straight-up information about the pros and cons, and let me choose.<\/p>\n<h3>Every choice in life has risks.<br \/>\nYou cannot evaluate doing something without also evaluating not doing it, and <em>comparing<\/em>.<\/h3>\n<p>See, &#8220;not screening&#8221; carries risks, as does screening itself.<\/p>\n<p>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.<\/p>\n<p>It&#8217;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: <em>greater<\/em> risk of clotting: a botched conclusion with medical consequences. You could call it <strong>statistical malpractice.<\/strong><\/p>\n<p>Just SHUT UP if you want to tell me &#8220;Don&#8217;t take away my tests!!&#8221; I didn&#8217;t say that. Don&#8217;t be insane, hearing things I didn&#8217;t say. That&#8217;s hysteria.<\/p>\n<p>I&#8217;m not talking about the conclusion, I&#8217;m talking about how to make intelligent choices.<\/p>\n<h3>Who gets hurt? The patient.<\/h3>\n<p>In a <a href=\"http:\/\/blog.lib.umn.edu\/schwitz\/healthnews\/2009\/11\/10-things-that.html#comment-2941491\" rel=\"nofollow\" target=\"epd\">comment on Gary Schwitzer&#8217;s excellent blog<\/a>, I said what really upsets me in the mammography insanity is that (ironically!) it&#8217;s women who are put at increased risk by these misinterpretations: women who are left with less accurate advice.<\/p>\n<p>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 \u2013 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&#8217;s 100%! Headlines!<\/p>\n<p>Here&#8217;s the consequence: Because of <strong>ignorant misinterpretation<\/strong>, massive numbers of women went off the pill, and in the following year &#8230;<\/p>\n<ul>\n<li>13,000 more abortions were done in England and Wales<\/li>\n<li>13,000 more births, including 800 under age 16<\/li>\n<\/ul>\n<p>The special irony is that both abortion and pregnancy have <strong>higher rates of clotting than the pill itself.<\/strong> So the whole ignorant diversion was not only ill-considered, it <strong>worsened<\/strong> women&#8217;s health (while increasing abortions and births).<\/p>\n<p>Doesn&#8217;t it irk you that the righteous protests about protecting women&#8217;s health, ignorantly considered, lead to bad advice?? <strong>These errors in interpreting science harm people.<\/strong><\/p>\n<h3>The idiocy of asking celebrities their opinions<\/h3>\n<p>Whatever credibility our network news media had with me, they lost it when they trotted out ignorant celebrities to contribute to the misinformation campaign.<\/p>\n<p>A new blog, the oddly named <a href=\"http:\/\/is.gd\/559iQ\" rel=\"nofollow\">Celebrity Diagnosis<\/a>, 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 &#8220;They want to abandon proven therapies. It&#8217;s wrong.&#8221;<\/p>\n<p>Excuse me? Since when is a test a therapy? Jaclyn, is checking your pants the same as laundering them? Maybe that&#8217;s over your head. So shut the hell up on medical advice, willya?<\/p>\n<p>But that&#8217;s what Gilles is talking about when he cites moral panic, which the Center for Media Literacy <a href=\"http:\/\/www.medialit.org\/reading_room\/article565.html\" rel=\"nofollow\">defines<\/a> as &#8220;A sudden increase in public perception of the possible threat to societal values and interests because of exposure to media texts.&#8221;<\/p>\n<p>And what better way to drive people to panic than fear of death?<\/p>\n<p>But hold on; I&#8217;ve been there. Let&#8217;s think.<\/p>\n<h3>On the fear of cancer and death<\/h3>\n<p>When I learned on 1\/22\/07 that my median survival time was 24 weeks, it was NOT pleasant for me. &#8220;No. I am not done. Not ready to go.&#8221;<\/p>\n<p>But after the abrupt shock, I found myself able to look it in the eye and <em>think<\/em>. What\u00a0are my choices? Where do I start?<\/p>\n<p>Twenty years ago I listened to tapes titled &#8220;Conscious Aging&#8221; and &#8220;Approaching Death&#8221; by Ram Dass, a spiritual teacher who was born Richard Alpert and who, in the sixties, wrote <em>Be Here Now<\/em>. After years in Tibet with gurus he worked with many dying people during the AIDS epidemic. (I&#8217;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.)<\/p>\n<p>He speaks of death matter-of-factly, and his perspective aided my acceptance of what I was abruptly facing. I wasn&#8217;t interested in going through that door, but after a while I realized that if that&#8217;s what was happening, I could face it.<\/p>\n<p>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.<\/p>\n<p>I don&#8217;t diminish the concerns of people who face cancer and\/or death &#8211; everyone&#8217;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 &#8220;OMG!&#8221; and &#8220;How terrible!&#8221; I chose to think about &#8220;What are my options? What could be done that would make any difference?&#8221;<\/p>\n<p>If we could all face death calmly I bet we&#8217;d be able to make much better choices in how we interpret evidence.<\/p>\n<h3>Think.<\/h3>\n<p>That&#8217;s why hysteria (<a href=\"http:\/\/en.wikipedia.org\/wiki\/Hysteria\" rel=\"nofollow\">Wikipedia<\/a>: &#8220;unmanageable fear or emotional excess&#8221;) is so very, very harmful. When people lose their minds, perhaps because they&#8217;re <em>told<\/em> foolish misinterpretations of the evidence, what are the odds of reaching a sane conclusion?<\/p>\n<p>Oh wait: we don&#8217;t have to ask the odds. This time we know.<\/p>\n<p>Well done, Gilles. Obviously you touched a nerve.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Some things are what they call &#8220;evergreen&#8221; &#8211; persistent value, never out of date. 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