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.

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  • Alice Robertson

    Well….did I tell you the story about the….:) Indeed, people take heed to anecdotes…often over and above evidence…problem is we can usually find out the truthfulness of a storyteller quicker than we can figure out what is truly “evidence-based medicine” these days. What can ya’ do….people still believe in animal parts in the Mountain Dew or Pepsi….even though the company issued their own anecdotal response….the pop would have dissolved the parts of the creature and, therefore, makes the legend a myth. Cheers!:)

    • Brad Wright

      This is why exists. :)

      • Alice Robertson

        Ha! But snopes is a huge right wing conspiratorial website! . Seriously…the dissolving legal retort stuff was on major networks a few months ago. It was on the GMA morning show and reporters balked at the irony of the response. Jay Leno had some jokes about it…..and that makes it terribly believable. :)

  • Amanda Stenson

    You give an example of 1 person being helped out of 100 given a test,
    but the reality of most testing and screening is 1 helped out of
    thousands tested and you neglect to mention the 10s or hundreds that are
    harmed by over-diagnosis and over treatment of benign anomaly’s to
    balace that one individual that benefits..How about we start giving
    those poor souls anecdotes some press coverage ? Balanced information,
    full and honest disclosure of benefits and the true risks, Only in my
    dreams I’m thinking…

    • Brad Wright

      Very true. Keep in mind that people are notoriously bad at understanding probability. Base 100 calculations seem to be helpful in that regard, but sadly, that does make my piece more anecdotal than factually accurate.

  • Patient Commando

    I may be late into this discussion, but the reality is simple: “Stories trump data”.

    To your point that “narrative can threaten our work” indicates to me that there’s still a need for a better understanding that “Stories are where we find meaning. They personalize, illustrate and “market” evidence by presenting it in ways that resonate with others. In relating on a personal level, the listener or reader can identify with the message and glean information useful to them – information that can make a critical difference in the provision of care.”

    Patient centred care is all about making the patient narrative inform the delivery of care. In order for policy to be developed that represents the actual needs of the public, its got to take the same approach. And then it needs to be delivered in a humanistic manner, that speaks to the public in the most resonating way possible. Successful policy in the future will not be delivered by weighty, extensive reports detailing decades of statistical analysis.

    Meaningful policy that affects millions will respect the emotional needs of the public and will be delivered by the voice of a single citizen.

    Zal Press
    Executive Director

    Patient Commando Productions

    • Brad Wright

      I think you miss the parts where I explain the value of narratives and how important it is for researchers and policy makers not to lose sight of people in their work. That said, people are notoriously horrible at understanding probability. Patient-centered care should be based on providing patients with all of the salient information and then listening to them when they make an informed decision that also includes their own personal preferences, though it is also so much more than that.

      You are right that “stories trump data” — but only insofar as it concerns motivating people’s actions — data trump stories when it comes to outcomes, for example. Both are important, which is why I stress holding both in tension, lest something be lost.

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