I don't know one person who chooses patient advocacy as a career path. Most always, it chooses you.
I'm an example. Blessed for decades with a healthy family, I was blissfully ignorant of how an illness or event can change your life forever. As a television news and medical reporter for more than 20 years I'd interviewed many people with medical challenges. But my true "medical awakening" came in 2005, when my then-healthy father fell down the stairs and needed surgery on his neck. The surgery went well, but complications, including an infection, would eventually take his life six months later. As dad's only daughter I'd assigned myself the job of watching out for him in the hospital. His death ultimately sent my life along a new path: I wanted to help other families have more informed medical experiences.
I started by helping pass two patient safety laws in my home state (RI) and went on to national policy work with NQF, CMS, AHRQ and other groups working toward greater quality in health care. Wanting to help non-medical people understand key realities, risks and opportunities, I wrote a book with stories and simple analogies to drive home what's at stake. I also created a tool for patients that would bring them a measure of comfort and control when they're stuck in a hospital bed – something that had been sadly missing for my father.
Within my policy work, I found patient voices were often under-represented in the room. With funding from the Partnership for Patients, I was honored to hold a workshop equipping a dozen patient advocates from around the country with video-recorded presentations that would launch them into new speaking opportunities. This was a step toward co-founding the Patients' View Institute, a national platform where patients could have a more cohesive voice and more impact on the quality of care they receive. Over 5 years, we listened to more than 1,250 patient stories, told the most impactful on stage to national and international audiences, and carried their top line message loud and clear: patients want to be listened, to, respected and cared for.
I couldn't know at the time that everything I'd learned would be called upon in 2012, when our then-26-year-old daughter was diagnosed with Guillain-Barre Syndrome, a paralyzing nerve disorder that can be fatal. The experience left me humbly grateful for her medical team, whose skills and training, along with the wonders of modern medicine, brought our daughter back to us. It also reinforced my conviction that we're all enriched, in ways we can't imagine, when clinicians, patients and families "see" each other as valued partners..