The patient voice: a biased or valuable source of information?

Casper G. Schoemaker reflects upon a recent interaction which caused him to consider how we should think about the value of patient accounts of illness.

The education department of our academic hospital is proud to be ‘patient-centered’. Consequently, a patient was invited as the first keynote speaker at a retreat for teachers and some students. I found her story impressive and insightful; some listeners were clearly moved. I kindly asked the PhD-student sitting next to me what she thought of the speech.

“I don’t know”, she replied. “I can’t listen to patients. When they start to talk, my ears just stop working. The only thing I can think of is N=1”. She explained that in the clinical epidemiology lectures she had been taught that stories of individual patients are always biased.  “If another patient had been invited, she would have told us a whole different story”. The other biomedical PhD-students nodded: they agreed.

I just didn’t know what to say. In the following weeks, her words resonated in my head. Was she just a callous individual, blaming others for her own lack of empathy? Or was she right, and did we really teach our students not to listen to patients? I decided to examine the clinical epidemiology reader of our department. Overall, it struck me as overly concerned with preventing bias. I could not find any encouragements to listen to patient stories. The authors described case studies as the lowest form of evidence, implicitly assuming they were told by a doctor. A lay person telling her own emotional story was the pinnacle of bias, that went without saying.

From the literature I learned that this reader was not an exception.1.2 And our PhD students were not the only researchers concerned about “public knowledge deficits and their biases, emotions and personal interests potentially damaging the integrity of science”.3-5 In this era of ‘patient-centeredness’ many biomedical researchers will not openly admit that they agree with the words of professor of medical sociology Lindsay Prior in 2003: “For my part, I accept that patients can have extensive knowledge of their own lives and the conditions in which they live. I also recognize they can (and sometimes have to) turn themselves into experts in order to challenge medical hegemony. But I shall argue that, for the most part, lay people are no experts. They are, for example, rarely skilled in matters of (medical) fact gathering, or in the business of diagnosis. What is more they can often be plain wrong about the causes, course and management of common forms of disease and illness.”5

Then I realized that not only our future researchers, but also our future clinicians studied this reader, in their Evidence Based Medicine (EBM) courses. This and other EBM publications “do not tell clinicians how to integrate patient values and circumstances with the best clinical research. Similarly, most EBM workshops focus on critical appraisal and spend little (if any) time telling clinicians how to learn about or integrate patient values and circumstances into their clinical decision-making.”6 The implicit message not to listen to patients counteracts all thoughtful courses on shared decision making developed for medical students.1

What can we learn from this anecdote? Did I accidently come across a serious failure in EBM? The event I described is probably very biased, but it really made me think. And that is what saddens me most about this PhD student: not listening to a patient keynote speaker deprived this member of the scientific community from the possibility to reflect.7 As Brian Wynne stated eloquently: “It seems especially ironic that the institution most compellingly associated historically with a cosmopolitan ethos of openness, that is science, should find itself implicated increasingly deeply in the opposite.”8

 

References

  1. Braschi E, Stacey D, Légaré F, Grad R, Archibald D. Evidence-based medicine, shared decision making and the hidden curriculum: a qualitative content analysis. Perspect Med Educ. 2020;9:173-180.
  2. Lawrence C, Mhlaba T, Stewart KA, Moletsane R, Gaede B, Moshabela M. The Hidden Curricula of Medical Education: A Scoping Review. Acad Med. 2018;93:648-56.
  3. van Bekkum JE, Hilton S. UK research funding bodies’ views towards public participation in health-related research decisions: an exploratory study. BMC Health Serv Res. 2014;14:318.
  4. Flinders M, Wood M, Cunningham M. The politics of co-production: risks, limits and pollution. Evidence & Policy: A Journal of Research, Debate and Practice. 2016;12:261-79.
  5. Prior L. Belief, knowledge and expertise: the emergence of the lay expert in medical sociology. Sociol Health Illn. 2003;25:41-57.
  6. Howick J. The philosophy of evidence-based medicine. Chichester: BMJ Books; 2011.
  7. Packer CD, Katz RB, Iacopetti CL, Krimmel JD, Singh MK. A Case Suspended in Time: The Educational Value of Case Reports. Acad Med. 2017;92:152-156.
  8. Wynne B. Elephants in the rooms where publics encounter “science”?: A response to Darrin Durant, “Accounting for expertise: Wynne and the autonomy of the lay public”. Public Understanding of Science. 2008;17:21-33.

 

Casper G. Schoemaker is an advisor and trainer on patient involvement in research at the University Medical Center in Utrecht. He is a patient representative and was trained as a researcher.

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