Do Cesareans Cause Endometriosis (Redux): What could patient-driven research look like?
This post is part of the forthcoming Grand Rounds Blog Carnival at e-patients.net. Contributors were asked to write a post “inspired by, supportive of, or critiquing an article in the Journal of Participatory Medicine.” I chose as my inspiration Gilles Frydman’s Patient-Driven Research: Rich Opportunities and Real Risks.
When I started this blog a year and a half ago, my primary motivation was my belief that childbearing women deserved, above nearly all else, care that was “evidence-based.” As I prepare to hand over the reins to a new Community Manager, I want to say to my readers and to my successor: I was wrong. Evidence doesn’t hold all of the answers.
There are many reasons I have come to believe this, but there are two I want to write about today. The first is that the way research is currently funded, conducted, and disseminated, it simply doesn’t address many outcomes that women care about. The second is that we all arrive at the point of healthcare decision making with a different constellation of factors that affect our choices. We may have different financial resources, health situations, hopes and plans for the future, tolerance to pain, tolerance to risk, prior experiences, and so on.
In other words, with the exception of practices that cause harm with no counterbalancing benefit at all or benefit with no risk of harm at all, there is no such thing as a good or bad healthcare decision. There’s only such a thing as a good or bad healthcare decision for a certain person. Evidence cannot guide practice without the other piece of the equation – the person to which the evidence is to be applied.
The more I think and write about these issues, the more I begin to wonder if there’s a better way of creating and disseminating knowledge than evidence-as-we-know-it. Underscoring this is a phenomenon that has unfolded over the past year right here on this blog. In May 2009, Science & Sensibility contributor, Henci Goer, presented the findings of her review of the literature on cesarean surgery and a little-known complication: new onset endometriosis. She wrote:
So why is this reasonably common serious adverse effect of cesarean surgery something you have never heard of?…Cesarean wound endometriosis would never turn up in a randomized controlled trial (RCT). Even if the problem made it onto the researchers’ radar, the trial would have to be extremely large and follow-up impractically long to detect it. Where RCTs are considered the only evidence worth having, outcomes that cannot be picked up on by RCTs functionally don’t exist.
It was kind of a technical post about the limitations of the hierarchy of evidence, using cesareans and endometriosis as the example. But an awesome thing happened. Women started finding the blog post, and sharing their own experiences with sometimes terribly debilitating endometriosis after cesarean surgery. It started with a well known cesarean activist confirming that the association between cesareans and endometriosis was “not news” to her – through her work she had met many cesarean mothers dealing with cesarean scar endometriosis. Then women who had experienced it themselves shared their insights, and asked questions, and others answered, and they got interested in eachother’s experiences and a community formed.
I highly recommend you read the original post and all of the comments, but you can also get a flavor by looking at this excerpt of the presentation I will give next week at the Digital Pharma East Conference in Philadelphia.