Calling Patient Advocates–Share Your Story
July 12th, 2010
By Robin Strongin. I spent part of this past weekend at the Ovarian Cancer National Alliance (disclosure-a client of mine) Annual Conference and came back both humbled and inspired. It is a remarkable experience to talk with people whose lives have been profoundly changed by cancer. Their grace and strength, their determination to DO something — about research, about curing this disease, about changing laws, about helping others – was inspiring. The women I met were young and not so young, they had hair, and bald, tatooed heads, they came from all over the country and they were all, in their own way, supporting each other and themselves. Many of them had become advocates.
Over the years, I have noticed an exponential increase in the number of professional health advocates and individual patient advocates. Many advocates, not surprisingly, have been personally affected by illness–and the unbearable frustration that comes with having to not only focus on healing, but navigating multiple dysfunctional health care systems along the way–whether it’s poor quality care, misinformation, lack of information, difficulties finding health care professionals who meet individual needs, to name a few.
Advocates are certainly not new, but what has changed are the availability of new online and mobile tools to connect advocates, their families, their friends, and others with similar situations. The ability to organize, advocate, tell your story, through various mediums has fueled a new phase of patient advocacy– and given voice to what I see as a revolution.
Disruptive Women in Health Care is working on its newest e-book which will feature posts by a wide range of patient advocates–these stories and shared experiences will not only move you but will provide useful information so you too can advocate.
Look for these posts throughout the summer, and send us your stories as well.
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