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The People and Evidence-Based Medicine: We are All Above Average


From the August 30 New York Times:

'Every driver on average thinks he's in the wrong lane, Dr. Redelmeier said.'  'You think more cars are passing you when you're actually passing them just as quickly.'  Still, you make a lane change when the benefits are illusory and not real.'

Meanwhile, Katie Hafner, author of the article, notes that changing lanes increases the chance of collision three-fold.

Out of 50,000 radical prostatectomies performed every year in the United States alone, Dr. Scholz writes, more than 40,000 are unnecessary.

In his review of Dr. Schloz's book, Invasion of the Prostate Snatchers: No More Unnecessary Biopsies, Radical Treatment or Loss of Sexual Potency, NYTimes writer Dana Jennings, asks: Was my life worth the 47 other prostatectomies that probably didn't need to be performed?  I don't know.  I'm a man, not a statistic.

These two adjacent articles remind me why the idea of acting on the basis of evidence is so emotionally fraught for us and for our physicians. Evidence is produced based on averages. Policies, rules, standards and guidelines are based on those averages. We, however, experience traffic and illness and the events of our lives as unique individuals.

We see exceptions to the evidence everywhere: your 85-year-old, fit-as-a-fiddle neighbor who has smoked a pack a day since she was 12; your co-worker whose metastatic cancer was treated with an off-label drug two years ago and she's doing great; my brother, a horrible driver who has never had an accident.

Further, we tend to see ourselves as exceptional: I can exceed the speed limit and change lanes because I am a better-than-average driver. I don't care if that drug didn't stop most people's cancer: it worked for a few of them and I believe it will work for mine.

Sometimes we experience evidence and the laws and guidelines that they support as an affront to our autonomy to our ability to choose what we think is best for ourselves and our loved ones regardless of the averages, regardless of the guidelines or regulations. While this general belief may be tinged with partisan colors, it bears no political baggage when a father seeks the best care for his child's pain or a woman tries to save the life of her beloved. It is a heavy lift for a person to endorse evidence-based approaches, when she feels such approaches pit her personal safety, life, and future against regulations and laws based on averages.

Many physicians also feel their personal and professional autonomy are undermined as they are forced through clinical policies and incentives to weigh evidence-based guidelines against their own experience and their responsibility to the patient in front of them, described in the NEJM by Jerome Groopman.

Comparative effectiveness research, evidence-based guidelines and performance standards are all tools aimed at improving the effectiveness of health care based on evidence.  In the coming months, they will be strengthened by the recently passed Patient Protection and Affordable Care Act. These approaches are covered in the news and they are controversial; their shortcomings and flaws are the topic of blogs and political campaigns.

Despite the heated rhetoric and the admitted bluntness of the instruments of evidence-based clinical policy, it is difficult to imagine how progress toward more effective health care will be widely incorporated into delivery without them. These are the tools available. They must be constructed and implemented wisely, which means in part, that the perspectives and priorities of patients and families are incorporated at each step of their development and dissemination.

But the success of these approaches in achieving the aim of better health for each of us as individuals depends on our active participation in decisions about our care learning, questioning and deliberating with our physician to find the delicate balance between the evidence and our unique needs to chart the course of treatment that will best ease our suffering.


More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

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