Stop designing studies around outcomes that don’t matter to patients

I recently returned from four days of training in evidence-based healthcare (thank you, AHRQ and Colorado School of Public Health). I was honored to work side by side with journalists and decision makers as we learned to ferret out systematic bias in medical research.

Before I went to the workshop I re-read “Lies, Damned Lies, and Medical Science,” a 2010 article from the Atlantic which begins, “Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong. So why are doctors—to a striking extent—still drawing upon misinformation in their everyday practice?”

Harsh, but as the workshop wore on I realized: true.  And important, though perhaps disconcerting, for patients to understand. It’s imperative that both providers and patients learn to critically evaluate their sources of medical information.

One of the workshop’s take-away messages I particularly endorse was this: researchers should stop designing inquiries around outcomes that don’t matter to patients. We reviewed some studies that seemed better suited for mice but were nonetheless conducted in humans.

Overall, though, it appears that patient perspectives and values are increasingly part of research design. The Patient Centered Outcomes Research Institute (PCORI) is funding exciting new studies. In a recent article, PCORI explains “Why Methods Matter.”

The healthcare delivery systems of today differ markedly from those of the past, and the way care is delivered can have a profound impact on outcomes. These factors combine to make it difficult, but critical, for patients and their care providers to understand and use the research information most relevant to the health decisions they make.

Providers and patients are making progress in defining and trying out new ways of communicating about clinical decisions. Achieving the best outcomes via this newer, more participatory practice of medicine requires attention not only to the evidence provided by high quality studies but also clinical judgment and respect for the bottom line: patient values.

Eve Harris is a patient advocate who blogs at her self-titled site, Eve Harris.

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  • Kevin Lulofs-MacPherson

    Rotator cuff repair research is great for this. Often the researchers try to confirm which techniques fails the least. Fail meaning retear. Interestingly, the functional outcomes, range of motion and pain levels are no different whether there was a retear or not… Instead of researching the need for repair, they are stuck researching something that may not matter…

  • Dike Drummond MD

    Totally agree with you Eve. If the patient can’t see, touch, taste or feel the outcome being measured in the specific study, they won’t notice or care about what is so carefully being measured.

    There will always be that sweet spot where the circles of the Venn diagram overlap
    cost — technical result being measured — patient perception
    And the Patient’s perceptions need to be one of the circles in that Venn.

    My two cents,

    Dike Drummond MD

  • Peter Yang, MD

    I agree

  • Gregory Dursteler

    Publish or perish will always drive a healthy amount of marginal research.

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