The Vision and the Voice of Patient Advocacy

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The Vision and the Voice of Patient Advocacy

 

When Dr. Susan McIver asked me to write the afterword for her book, After the Error: Speaking out about patient safety to save lives, her request seemed simple enough – talk about the genesis my work as a patient safety and engagement advocate and explain why I remain committed to this cause. The task seemed simple and straightforward, but putting my motivation and goals for doing this rewarding work into words was more challenging than I expected. The following is my attempt to pay tribute to everyone who has shared their painful health care experiences in the hopes of making things better for those coming behind them.

Afterword for After the Error:

 

The day my late daughter, Katherine Eileen Hallisy, was diagnosed with cancer I knew my life was forever changed. What I didn’t anticipate was that her illness would take me down a path that has led to well over a decade of patient safety and advocacy efforts.

My experiences are intertwined in some way with the themes of every story in this book. The accounts in After the Error are from Canadian citizens, but they reflect the universality of medical harm. These stories are all of our stories.

Every person who falls victim to medical error faces disbelief, isolation, and despair. We are often told that we are the cause of the problem – we are too sick, too old, we didn’t seek help soon enough or we didn’t communicate our questions or needs effectively. At some point, each of us felt forsaken by the very system that we always believed would be there in our time of need.

My daughter was infected with Staph aureus while in the operating room for a “routine” 30-minute biopsy procedure. In addition to coping with the horrors of dealing with metastatic cancer, we were immediately engulfed by the formidable and unforeseen enemies of medical error and hospital-acquired infection. As Kate was rushed to the Pediatric Intensive Care Unit and placed on life support, I naturally assumed that we had yet again come out on the losing side of our health battles.

The doctors told us that our daughter’s sudden illness was a rare and extraordinary event, and we believed them. The reality was that Kate’s infection was not diagnosed correctly or treated properly for several days, which lead to septic shock resulting in permanent lung and kidney damage. After speaking to other parents at the hospital whose children were harmed by hospital infections, we started to have doubts. Then, in 1999, the Institute of Medicine released a ground-breaking report about the challenges and dangers in the American health care system. The IOM report gave credence to the experiences of so many of us by stating publicly that medical errors are both common and often completely preventable. Medical harm is now seen as a worldwide epidemic and the solutions will involve a global effort.

As this book illustrates so well, many people who become patient advocates simply do not accept the status quo that delivering medical care in a complex environment inevitably leads to high levels of harm.  We believe, against all odds, that the voice of one person can make a real difference. And when that one voice is added to the sustained efforts of others who share our journey, the world can change.

Solutions that patient advocates were told were impractical, or even impossible, are now seen as innovative. Every time the powers that be say it can’t be done, we question their explanations and challenge their complacency. We cannot, and will not, stop pressing for a better way.  We want to validate our own experiences, to honor our loved ones, and to show others that there is no need for them to learn our tragic lessons the hard way. It is our consolation, and our dream, that our pain lead to positive outcomes for others.

In the United States, we see health care improvements that are the direct result of consumer activism – including pubic reporting of errors, accessibility to medical records, and calls for safer medical devices. Patient advocates raise awareness with efforts such as the creation of reference and educational materials for patients, websites, blogs, and social media campaigns. We work with established consumer advocacy organizations and we start our own groups to move patient issues forward. Patients sit on family advisory councils, hospital committees, and government groups.

These changes may have seemed impossible in the not so distant past, but they are clearly our future.  The patient voice, so long excluded from improvement efforts, is now seen as the key to meaningful progress in building health care systems that are safe, effective, and compassionate.

 

 

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