A different lens #patientnarratives

An article in the BMJ blog about The transformative power of patient narratives in healthcare education crossed my stream today. This timing could not be more appropriate as I am working on the discussion for my dissertation and working through the concept of health literacy.

From the article, Baines, Denniston, and Munro (2018, July 8), highlight three ways that patient narratives have value in healthcare education:

  1. we should not deny the subjective nature of patient narratives; it is not a weakness, but a strength
  2. we should strive to improve the opportunity and accessibility of narrative provision and receipt for both patients and educators
  3. we should seek to develop a culture of value, acceptance and transparency

The issue of value is the one that I have struggled with. I look at my illness blog and know that it has value. It has been valuable for me as a patient, but also valuable to many other patients. The illness blog genre helps patients better understand what it means to live with illness and how to cope with the various side effects of illness and treatment. One might argue that there is valuable medical knowledge within the blogosphere.

That being said, I am also taking a totally different lens when I look at the value in patient narrative. I am not looking at it from the perspective of the healthcare system or medical education. I am not arguing for the value in that context. I leave that to others. I am arguing that the patient narrative has value to other patients (and caregivers, family, and friends). The patient narrative focuses on the illness experience, not the disease. Medical education and the healthcare system is focused on the disease. In many ways, the illness experience is beyond their scope.

I agree that there is value in patient narrative for medical education – but the value is different. It is looking at the illness experience through the lens of treating the disease. Where patient narrative and peer-to-peer sharing of experience can help patients better live with illness. It can help patients understand what it means to live with illness. If you haven’t experienced it, then you don’t understand it in the same visceral way that someone who has gone through it does.

For a lot of my early stages of research, I was frustrated with needing to make the argument that patient narrative is valuable. I struggled with the frustration of the ideas of “evidence based” and “gold standard”, which all equate to quantitative (measurable), as being the only form of value in medicine and medical practice. I wanted to scream to say that illness experience matters too. My experience could help you be a better doctor. But now, I realize that I am making the wrong argument. I do not need to participate in that particular struggle. To me, the greater value in patient narrative is in the value it provides to other patients who are struggling to learn how to live with illness.

Feature image by Valentin Salja on Unsplash.

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