The currency of science and the value of stories

What is evidence? How do we gather evidence of patient harm? More importantly, what is the evidence that counts?

A research paper dating back to 2004 suggests that besides research evidence, clinical and patient experiences, as well as contextual information also constitute evidence. However, the only currency of science is data collected through systematic and rigorous research.

But when it comes to the business of medical error, the 3rd leading cause of death in the United States…research is a vehicle that doesn’t get us far enough.  It lets us look through a straw at “wicked problems” – a term coined by Rittel and Webber to describe problems so complex and multi-faceted that science can’t sufficiently address them. Policy, economics, climate change, and even some types of software design have all been dubbed wicked problems. Medical error has undoubtedly joined the ranks.

Research only allows us to sample brief instances in the patient care continuum. And because medical error is often a consequence of multiple little things that go wrong adding up to potential harm, sampling can’t capture all of them. What is needed is continuity across the care continuum. Only the patient or their caregiver have this continuity. This is where stories come in.

I recently had a paper rejected from a reputable health care journal – my own story. The paper was a theoretical analysis of a prevented medical error (a misdiagnosis that called for an unnecessary medical procedure) during my father’s hospital stay – a case of decision-making bias based on a breakdown in the continuum of care. The paper was rejected for two reasons – one, being that the journal has already published similar stories (personal stories of harm or prevented harm) … and two, my story was not deemed plausible by one of the MD reviewers. Reasonable feedback. Except I wrote it exactly as it happened, plausible or not. The tricky thing about medical error…it is not just the plausible errors that happen. The errors that systems science is struggling with are the ones that are unanticipated … implausible, leaving us to feel like “how could this have happened?”

We need brave voices to tell stories of medical error. To do so, a mother, Sorrel King, joined forces with patient safety experts. After losing her 18-month old daughter to medical error in 2001 at one of the best hospitals in the US, Sorrel made it her mission to bring attention to avoidable patient harm. I heard her speak at the 2018 Human Factors Healthcare Symposium, a conference focused on safety and quality in health care. A heartbreaking reminder that one does have the power to create a platform where none existed and motivate change on a large scale.

No research effort can capture the complexity and the context of an actual lived experience of medical error sufficiently. A story like Sorrel’s can.

But such stories are not data, not to scientists charged with providing research evidence! We need to turn them into data. Promisingly, many medical journals accept stories, but stop short at exemplars rather than at demonstrating the prevalence and variety … and mostly importantly, the complexity of medical errors.  The clinical picture of a patient has long been conceived as a story … a series of events connected through time, clinical and home settings, through clinicians, patients, and caregivers. And very importantly, about the capture and understanding of the context and complexity in which the patient story takes place. Thus, it is the format of a story that gives justice to the latent and active factors contributing to medical error. Through the mechanisms of telling stories and publishing them, we can turn them into data to fuel science in advancing patient safety efforts.

Elizabeth Lerner Papautsky is a psychologist.

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