Why "Patient No More"?
I'm an impatient patient with high expectations.
Sometimes, our dreams are realized in ways that exceed our expectations.
When I dreamt of being a writer, I imagined sharing my voice with others. I never thought it would also lead to becoming a national advocate for patients and families.
Why PATIENT NO MORE?
The phrase comes from an October 2017 article I wrote while attending a Patient Summit at a medical conference. I began with the words, “Haven't we patients been patient long enough?” And ended with, “I can't wait to see what tomorrow brings, since after all, I'm an impatient patient.”
In between, I wrote about my hope for a "sustained partnership" between clinicians and patients "predicated on the development of mutual trust, respect, and responsibility." I lauded the speakers’ powerful testimony about the positive and measurable impact on patient health when patients are truly empowered as full partners with the rest of the medical team.
Six years later, I want more. I want experienced and educated patients in the room when any major decision is made about healthcare. I want their voices integrated into those decisions, from their personal health plan to the design of clinical studies to improvements in hospitals and medical centers. And we’re doing it. I serve on several advisory panels as do most of the national advocates for patients I know, as well as though I only “know” on LinkedIn.
In a poetic completion of a circle, I currently serve on a patient steering committee for one of the researchers I quoted in the 2017 article. Then Kelly Smith, PhD, was a project co-principal investigator at Medstar Health Research Institute. Today, she is a principal investigator at University of Toronto and the project is very exciting. Take a look. I’ll write more about it in another article.
So Who Am I?
I’ve been a published writer and journalist for over twenty years with a broad portfolio. Since 2005, I've focused on writing about –– and working to help –– families in crisis. I do this because my own family survived 15 years of our son’s medical crises and we were lucky enough to have a happy resolution. My personal narrative book about those years (working title CATCH ME WHEN I STUMBLE) is in editing. Check back for updates. I'll let you know when it gets published.
Most recently, I'm proud of my column, Dx IQ. It's been helping patients apply the latest medical diagnostic news to their own care since 2018. Of course, all my latest articles are published here on my Substack Patient No More.
I proudly serve on the Boards of Directors of Pen Parentis and The Society to Improve Diagnosis in Medicine (SIDM). Pen Parentis is a small nonprofit with global membership that helps writers stay on creative track after they start a family. SIDM is a worldwide organization focused on solving the most common source of medical errors, diagnostic errors, commonly referred to as misdiagnosis.I also serve on the Patient Engagement Committee for SIDM.
And I’m thrilled to sit on the advisory panels for several major national projects on patient safety and diagnostic error to represent the patient experience. I’m a member of the American Society of Journalists and Authors (ASJA) and of the Association of Health Care Journalists (AHCJ).
The update on my son: he is healthy, married to the love of his life and working in the field for which he studied. I was only responsible for one of those but I revel in all three. I live in the New York metro area with my husband (who is the love of my life), very patient, and supportive.
I hope you’ll find these articles helpful and informative. Please let me know what you’re thinking about, read and share my posts and articles with friends and family, and let’s all try to help one another to find answers or peace.