In Reporting Symptoms, Don’t Patients Know Best?

“Here’s an emerging opportunity for citizen-science,” wrote Richard Sclove, a mentor and colleague working with me on this effort.

Sclove attached this NYTimes article illustrating why “doctors, researchers, drug makers and regulators should pay more attention to patients’ firsthand reports of their symptoms while they take medicines, because their information could help to guide treatment and research, and uncover safety problems.”

The following particular quote in the article caught my attention, because it punctuates the importance of seeking direct input from the end-user (patients, in this case; consumers or citizens in situations involving stem cells, geoengineering, synthetic bio, etc.). It is attributed to Dr. Ethan Bash, an oncologist who published this report in the New England Journal of Medicine:

“Direct reports from patients are rarely used during drug approval or in clinical trials,” Dr. Basch says. “If patients’ comments are sought at all, they are usually filtered through doctors and nurses, who write their own impressions of what the patients are feeling.”

0412_seco_graphic-thumbWideThis type of second- or third-hand interpretation can be misleading. Take a look at the graph on the left, for example (courtesy of The New York Times). There are a host of possible and plausible explanations listed in the Times piece as to why doctors and nurses don’t do a better job of reporting what patients tell them. They’re not being deviant or trying to harm the patients when they substitute their own interpretations for what’s actually being reported by the patient. Nor are scientists and policy makers when they serve to speak on our behalf. But the sum result = misinformation and that’s not helpful to anyone.

Doctors, kindly listen more carefully to your patients; scientists and policymakers, consider taking citizen input seriously. If you think the U.S.A. does a good job doing so, I invite you to read this brief post on the differences between how we  view public participation here vs. how it’s viewed in the U.K.

  • John T. Collier

    Darlene – Good analogy between getting symptoms directly “from the horse’s mouth” (so to speak) in addition to having it filtered. I suspect that it would work well both in medicine and in science policy. As a software creator AND tester, I know the value of getting the symptoms of a software bug directly from the person who ran into the bug; filtered bug reports usually lead you down the wrong path.

    Granted, getting a bug report directly from a single person is a lot different than getting science policy opinions directly from 10 million people (there is a scaling problem), but if you don’t even TRY to get the opinion directly “from the horse’s mouth”, you are ensured of having at least one missing input. Missing inputs = partial garbage in = partial garbage out.

  • John T. Collier

    Darlene – Good analogy between getting symptoms directly “from the horse’s mouth” (so to speak) in addition to having it filtered. I suspect that it would work well both in medicine and in science policy. As a software creator AND tester, I know the value of getting the symptoms of a software bug directly from the person who ran into the bug; filtered bug reports usually lead you down the wrong path.

    Granted, getting a bug report directly from a single person is a lot different than getting science policy opinions directly from 10 million people (there is a scaling problem), but if you don’t even TRY to get the opinion directly “from the horse’s mouth”, you are ensured of having at least one missing input. Missing inputs = partial garbage in = partial garbage out.

  • Kate

    I wonder how much of the “filtering” doctors and nurses do is to try to avoid problems with placebo effects, causation/correlation, etc? Humans are notoriously bad at objectively reporting observations…

  • Kate

    I wonder how much of the “filtering” doctors and nurses do is to try to avoid problems with placebo effects, causation/correlation, etc? Humans are notoriously bad at objectively reporting observations…

  • JT Lewis

    Sometimes patient-input creates cacophony, not clarity. One can always find anecdotal evidence to bolster one’s argument. See, for example, this Sunday’s NYTimes Magazine article and blog on menopause: http://well.blogs.nytimes.com/2010/04/14/the-mental-chaos-of-menopause/ (especially the passionate and testy blog comments on both sides of the issue.) Read in tandem with Scientific American’s Is Estrogen the New Ritalin? http://www.scientificamerican.com/article.cfm?id=is-estrogen-the-new-ritalin It falls to policy makers, researchers, and practitioners to tease out what is meaningful and accurate.

  • JT Lewis

    Sometimes patient-input creates cacophony, not clarity. One can always find anecdotal evidence to bolster one’s argument. See, for example, this Sunday’s NYTimes Magazine article and blog on menopause: http://well.blogs.nytimes.com/2010/04/14/the-mental-chaos-of-menopause/ (especially the passionate and testy blog comments on both sides of the issue.) Read in tandem with Scientific American’s Is Estrogen the New Ritalin? http://www.scientificamerican.com/article.cfm?id=is-estrogen-the-new-ritalin It falls to policy makers, researchers, and practitioners to tease out what is meaningful and accurate.