How Patient-Provider Engagement Can Transform Patient Safety

By Dave deBronkart

How would the world change if, suddenly, clinicians had a highly motivated partner in carrying out each care plan? I propose that a new level of patient safety will be possible if we shift to a shared care plan model, with patients and families aware of the plan and engaged in its execution.

I look at healthcare through the lens of a former patient: in 2007 great medicine saved me from Stage IV renal cell carcinoma. But I view it through another lens, too: as a high-tech business person who's watched industries evolve for years, it grips me that this miraculous industry has made so little progress on cost or safety—despite immense efforts by really smart people.

To me, that's a sign we've overlooked something. I assert we're making a fundamental error when we expect clinicians to know and do everything, and we pay a heavy price (literally and figuratively) for this mistake. We should share the load: enlist patients and families in making healthcare better.

The Plausible Promise of Participatory Medicine*

The Society for Participatory Medicine defines this new model as "a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners" (www.ParticipatoryMedicine.org). The Society arose in 2009 out of the "e-patient" concept developed by Tom Ferguson, MD (1944-2006). I joined the movement in 2008 after hearing about it from my physician, Dr. Danny Sands. In this column I write on my own, not on behalf of the Society.

A cornerstone of Ferguson's view is that in today's Internet-enabled world, what's possible in healthcare is radically different from 1990:

    * Patients today have access to information that used to be accessible only to clinicians and researchers. That doesn't make them clinicians, but it does show why it's possible for ordinary patients to bring value to the table.
    * Today patients can band together in smart communities, sharing experiences and research findings in ways that are inherently patient-centered. (Hospitals work at understanding what patients want; patients know what they want.) This doesn't mean every gathering of patients is inherently smart; it does show how it's possible for patients to aggregate knowledge.
    * While patients have access to increased power, clinicians are gripped in a pincer: inexorable pressure to see more patients, while enduring an information explosion. Increasingly, it's impossible for clinicians to keep up. I vetted this point with my oncologist, and he said, "Right—unless you're a sub-sub-specialist like me."

Ferguson saw this as an opportunity for empowered, engaged, equipped, enabled "e-patients" to help. At his death, he was compiling his observations into a white paper, which his team completed: "e-Patients: How they can help us heal healthcare." The paper is available for download at the Society's blog, http://e-patients.net.

Ferguson talked about patients being engaged in their care. He didn't talk about patient safety per se (though he did cite To Err Is Human [IOM, 2000]), but I'd like to extend his thinking to quality and safety, using five principles of participatory medicine. Visit www.psqh.com for the rest of the article.www.psqh.com

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