An Empowered Patient Coalition Blog. Why Now?

Posted by in Featured, Health Care Policy

An Empowered Patient Coalition Blog.  Why Now?

Why a blog? Why now? And what can we learn from the patients and their loved ones who are willing to share their health care experiences?

I have resisted blogging because it is always a challenge to fit new projects into my ongoing patient advocacy efforts. I am a practicing general dentist working full-time on the front lines of health care, a wife and mother, an author, and the Founder and President of The Empowered Patient Coalition non-profit organization. Like so many others, time management is an intricate balancing act in my world.

The reality is that the patient voice is needed in health care more than ever. We have made progress in our quest for care that is safe, effective, and compassionate but we are not where I imagined we would be when I started this work well over a decade ago. We can, and must, do better. Martin Luther King, Jr. attempted long ago “to remind America of the fierce urgency of Now.” This blog is a testament to the fact that we are long overdue for radical change in our health care system. There is a moral imperative to act now. To choose complacency is to turn our back on the heart of humanity – our love for one another and our responsibility to the most vulnerable members of our society.

I fully intended to be retired from patient safety by now. Surely, the disability and loss of life from unsafe medical care would no longer be tolerated once the magnitude of the problem was exposed. And, in 1999, the Institute of Medicine (IOM) report To Err is Human: Building a Safer Health Care System did just that. This ground-breaking report alerted the public to the ever-present danger of medical errors and put a human face on the resulting tragedies. For perhaps the first time, the public began to realize that medical harm represented a serious threat to their safety and an ongoing challenge to our health care system. This report validated what so many of my family members had experienced first-hand and continues to fuel my patient safety and advocacy efforts.

I often write about the health care challenges of my late daughter, Katherine Eileen Hallisy, who fought cancer five times by the age of ten. The reality is that three generations of my family have been touched by medical errors that included infection, delays in diagnosis, and failure to rescue. I haven’t shared this part of my story until now because it seems almost impossible to believe that tragic medical events could happen several times in the same family. In my patient advocacy work I have now met many others who share this unfortunate fate and our stories need to be told – because they are both tragic and increasingly common.

I promised my daughter that I would share with others all the lessons we learned during her illness. I published my book, The Empowered Patient: Hundreds of life-saving facts, action steps and strategies you need to know in 2008 and in 2010 founded a non-profit organization to inform and empower patients, families, and caregivers. I know what it feels like to struggle at the bedside and to live with the fact that what I didn’t know may have allowed additional harm to reach my daughter. The voice of the patient is often overlooked, but it is essential in finding solutions to the formidable challenges facing our health care system. I hope that this blog will help us all listen and learn from the stories, lessons, and solutions that patients have to share.