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 each other'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.

Excerpt: Web 2.0 and Participatory Maternity Care on Prezi

The comment thread of the blog post - in which no doctors or researchers participated - also turned into a rich source of qualitative data on the quality of life impact of both the disease and the various treatment options. What's more, women themselves weighed in on how traditional forms of evidence could better evaluate causality, disease progression, and treatments. Not to mention it proved immensely empowering for women who thought they had run out of options or that it was all in their heads.

I am proud of the endometriosis post for all it has offered to readers who stumble upon it - about 50-100/month more than a year later. I also know it is a significant source of 'data' and offers important research potential. But at the same time, it seems so serendipitous and raw. What can we really make of a couple dozen comments on a blog post, and is it reasonable at all to use that data to guide research or care when it doesn't even remotely resemble the scientific method?

Those who espouse evidence-based practice would rightly be skeptical of the idea that patient-oriented social networks might ever constitute a meaningful source of 'evidence'. To them I offer three of many examples: Patients tracking their own data and discovering new treatments; a college kid diagnosed with a rare cancer who is at the center of efforts to accelerate research on his disease; and apps that measure and track how a person's health condition actually affects her life and provide continuous feedback for disease management and healthcare quality improvement. These and other examples emerging from the Participatory Medicine movement have given me a glimpse of what patient-driven research might look like. It looks quite different from what traditional (corporate-driven, government-driven, academic-medicine-driven, etc.) research looks like. It involves patients at every level, values the lived experiences of health and disease, integrates the full range of factors that guide decision-making, and relies on tools for data collection and dissemination that are accessible, adaptable, and often free.

What would patient-driven research in maternity care look like? I don't exactly know, but I would like to find out. I know women themselves hold the key to a huge store of data that matters - their own experiences, knowledge, and insights and their undocumented health data. And increasingly, I know women are documenting and sharing these raw data online. Our challenge is to transform it into usable data that can guide research and improve health and healthcare.

This post is part of the forthcoming Grand Rounds Blog Carnival on Participatory Medicine. For more on participatory medicine and research, see Gilles Frydman's Patient-Driven Research: Rich Opportunities and Real Risks in the Journal of Participatory Medicine and for more on how it applies to maternity care, see my article (co-authored with Hilary Gerber and Desirre Andrews),Social Media, Power, and the Future of VBAC, in the current issue of the Journal of Perinatal Education.

Published: October 10, 2010

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