Should personal anecdotes play a role in health policy?

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.

Brad Wright is a health policy postdoctoral fellow who blogs at Wright on Health.

View 7 Comments >

Most Popular