we are not anecdotes; we matter

I (KW) have been thinking lately about the importance of personal stories/narratives in our partnership work at Selling Sickness. It fits with one of the principles at the core of our partnership model — mutual respect and appreciation for diverse sources of information and knowledge.  This attitude offers a real opportunity to bring people with different points of view and experiences together to start new conversations.

I was reminded of the importance of the narrative at a meeting I attended last week for social entrepreneurs with an audience largely made up of corporate executives and non profit leaders.  It was held at People Serving People, the largest family homeless shelter in Minnesota. In addition to providing housing for families in transition, this group has also developed many innovative programs for strengthening the families by focusing on the children.  At the meeting, rather than run through a litany of documented studies showing the positive results of this programming, the CEO of the nonprofit showed a video of a 9 year old girl who has spent the majority of her life in and out of shelters. The story beautifully illustrated the “WHY” behind their work more effectively than any statistic or study result.

Personal stories in the medical field are not valued as much as clinical or scientific evidence.  They are often dismissed as anecdotal, though don’t try and tell a family member who has experienced something tragic that their loved one is just an anecdote.  Regardless of all the population-based studies, the only evidence that truly matters for them is what happened on the individual level.

Shortly after my husband’s death, I flew to Washington DC to meet with the FDA’s Dr. Tom Laughren and Dr. Bob Temple to tell them Woody’s story.  While they told me they were sorry for my loss, they quickly dismissed Woody’s death as anecdotal and said they couldn’t do much with his story as the FDA is a scientific organization. I recall leaving in dismay thinking that when a plane crashes the NTSB doesn’t just look at the maintenance and safety data; inspectors also go out and investigate, ask questions, listen to stories, etc. It’s part of a 360-degree review of the situation.

I believe stories are an essential part of how people understand and use evidence.  The personal narrative can help connect the dots. While Woody’s death didn’t occur in a double blind controlled study, it shouldn’t be discounted as anecdotal. As both the 2006 PLOS article, “Anecdotal Evidence”: Why Narratives Matter to Medical Practice and the 2011 JAMA article, Narrative vs evidence-based.  AND rather than OR  suggest, both stories and evidence-based science are important for understanding and change.

I believe fresh ideas emerge at the intersection where medicine meets stories.  And these ideas might be just what’s needed to shift the current culture of medicine.