How Much Weight Should Anecdotes Really Have In Health Policy?

24 May

There’s something compelling about the personal narrative that vast mountains of quantitative data cannot rival. Anecdotes are, quite simply, powerful. They tap into our shared humanity, making something seem somehow more real by putting a face on it. This is why, if you follow politics for very long, you will find numerous cases of policymakers championing issues that have touched their own lives in some way. For example, Senator X doesn’t care about issue Y, until they discover that their son or daughter is affected by it. Then, almost overnight, they seem to care more about issue Y than almost anything else. Such a shift is completely understandable, but often out of proportion to the true scale of the issue in society.

In health policy, the personal narrative can also be very powerful. In fact, the journal Health Affairs routinely runs a “Narrative Matters” section that puts a face on the health care issues of the day. It is absolutely critical that health policymakers, health services researchers, and others, not lose sight of the fact that their work and the subsequent decisions it informs, are based on real people. However, it is equally critical for objectivity to be maintained, and narrative can threaten our work in this regard.

As an example, Tom Perkins recently wrote in the Wall Street Journal about his ongoing battle with prostate cancer in his eighties. His article takes issue with recommendations from the U.S. Preventative Health Service that call for moving away from prostate cancer screening (the PSA blood test). It’s hard to argue with his case, specifically, because he had an aggressive form of prostate cancer that was caught early and is being treated with at least moderate effectiveness. Had he not been screened, the cancer would most likely have killed him. You can see why he would consider the U.S. Preventative Health Service to be a “death panel” (his words, not mine).

The problem is that Tom Perkins is an anomaly. The overwhelming majority of prostate cancer is not aggressive. This is why you may have heard the saying “Most men die with prostate cancer, not of prostate cancer.” One of the greatest things about health services research is the opportunity it affords to step back from the trees and take stock of what is happening to the forest. What we discover then leads us to confront more philosophical questions. For example, are we okay with paying for 100 people to be screened for something that will only help 1 of them? If you were making this decision the way you make decisions about most everything else you buy, you’d want to know some things. For instance, how much does the screening test cost? If the test isn’t done, what else could the money be used for? How accurate are the results of the test? How much will the 1 person be helped? Do I know the 1 person? Am I the 1 person?

These questions represent the continuum from purely objective research to very subjective personal anecdote. They all deserve to be answered, and each answer informs our decision-making in a different way. Unfortunately, when people espouse one extreme or the other, which is admittedly much easier to do than holding the two in tension, something very important gets lost.

1 Comment

Posted by on May 24, 2012 in "Rationing"


One response to “How Much Weight Should Anecdotes Really Have In Health Policy?

  1. erik

    May 24, 2012 at 8:17 pm

    I think your post nicely shows the tradeoff between quantitative data and anecdotes; but it obfuscates the larger issue with prostate cancer testing. There are two issues: 1) cost and effectiveness of the test; 2) treatment options after the PSA test.

    The cost of a PSA test is roughly $50, at least from my preliminary research. Many individuals might be willing to pay that fee simply for “peace of mind”; that is, the willingness to pay of men to know they do have cancer or do not have cancer.

    But the main problem with prostate cancer testing isn’t the PSA test, but the procedures that come after the test: That is where the real expenses come into play.

    Basically, the U.S. Preventive Services Task Force said they don’t like the unintended consequences of PSA testing-they think that the costs (medical) outweigh the benefits since few individuals may ultimately have an actionable tumor.

    The Task Force’s methods, much like anecdotes, however are woefully incomplete, and do not take in consideration all the data. Without knowledge of willingness to pay and a full cost effectiveness analysis, they are essentially making a decision based on incomplete medical data. Indeed, their conclusion that “PSA testing should stop” does not even seem to be warranted by effectiveness data, let alone understanding why and how much men would pay for the information.

    Thus, while Tom Perkins certainly may represent one extreme, the Task Force is certainly not making an “objective” decision either.


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