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Telling Stories Of Patients, Pain And Policymaking



September 9th, 2008

Sooner or later, we are all patients. This past weekend a group of journalists, doctors, advocates, health center leaders, technology experts, professors, and – yes – patients, gathered at Airlie House in Virginia to share stories and insights along the journey to improve health and health care. The small conference, “Patients and Policy Narratives: The Consumer Voice in Health Care,” brought together authors and potential authors of Narrative Matters essays – the personal stories with a health policy twist that Health Affairs has been publishing for nearly a decade with support from the W.K. Kellogg Foundation in the belief that quantitative data and analysis do not paint the whole policy picture.

Some of the stories told at the weekend gathering have already been published in Narrative Matters. Others will appear in coming months, including a planned essay by television journalist Jane Pauley in the May/June 2009 Health Affairs issue on mental health. One, a poignant story by Michelle Mayer on being a “difficult” patient, will appear in print and online tomorrow, September 10. Mayer, a research professor at University of North Carolina, Chapel Hill, and mother of two who is battling scleroderma, offers her take on the Narrative Matters conference in her blog, “Diary of a Dying Mom.” Here are a few excerpts:

“I cannot remember ever meeting 50+ interesting, down-to-earth, funny, honest, warm, wonderful, real people in a 48 hour period. Some of the attendees have taken personal tragedies — battles with cancer, medical traumas, the loss of children either as a parent or a clinician, etc. — and turned them into opportunities to be healers in some way. Some heal others through the written word and their humor, some founded organizations to help or educate other patients, and some use information technology to revolutionize the role of the patient in their own health care systems or on the Internet….

Health Affairs is a journal that is widely read on Capitol Hill by congressional staffers, but the greater public needs to know about these stories. You see, as one attendee put it this weekend, sooner or later we are all patients. While a certain percentage of us will die instantly and unexpectedly in an accident, most of us will take the usual route through some amount of suffering on our way out of here. So, health care is something we should all concern ourselves with as people and as citizens.

When we are healthy, we can “afford” to be ignorant about health care issues. Or can we? I was 26 when I got sick with an incredibly rare disease. Luckily I had insurance. More importantly, I was lucky I was able to continue working since my coverage was from my employer….

My illness could have financially devastated our family, ruining all the hard work that we put into earning the American dream. And we still could lose everything to an illness that I could not have avoided with all the preventive care in the world. Why? Because in the United States we don’t guarantee health care for all; we are the sole wealthy industrialized nation with that notorious claim to fame….

Many of us will some day care for elderly parents, fight our insurer for coverage of a drug or procedure, confront a formidable illness, or deal with a mental ill family member, all issues that have been written about in Narrative Matters. These essays are true stories from everyday people trying to obtain or give care in a system riddled with challenges for everyone involved.”

Mayer’s blog is filled with moving essays on parenting, living, and dying. You can sign up to receive an alert when Mayer’s and other new Narrative Matters essays are published in Health Affairs.

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