Ilene Corina, BCPA, President,Pulse Center for Patient Safety Education & Advocacy
In March 2020, it is 30 years since the death of my son from a preventable medical error. I use this term because it is one that I read about in research; research done by healthcare professionals who talk to each other about patient safety, medical mistakes and harm done to patients — sadly, so often preventable.
It wasn’t his death that triggered my interest and my passion into patient safety advocacy for myself and others. It was actually years later when I realized that my other children and I had no information about the physicians or clinicians who would make life-or-death decisions for us in our medical care.
When I realized that we had no information that would help us be active in our own care, I began talking to the public about our rights as patients, and how to become an “educated” person before entering the healthcare system. During that time, I learned of numerous people who have had experiences similar to my family’s and had no recourse even though they wanted others to learn from what happened to them. I began traveling to medical conferences and started becoming a patient’s voice — not for patients — I was never one to represent others, I was an individual person using the healthcare system and beginning to learn that medical errors within the healthcare system are a serious focus in treating patients. The people who work in healthcare know of this problem. Researchers know of this problem; the media also know. But after 30 years, the public is just beginning to learn about this problem.
My goal was then — and is now — to shift the focus to the person at the center of patient safety: the patient. Our focus is on people before they become patients. If you wait for education — such as being handed a patient education form when entering a healthcare system — that is not unlike teaching a person CPR when someone on the street is having a heart attack, or buckling up when the car is about to crash. We must plan ahead.
Why is this so difficult? Because for thirty years the funding for patient safety training has run through the hospitals and universities, relying on staff who are already burdened with too many hours and an overload of paperwork. The system asks them to take sole responsibility for patients’ safety when in fact, the patients they are treating can indeed take some responsibility themselves.
That is why this year, Pulse Center for Patient Safety Education & Advocacy, a nonprofit 501(c)(3) organization is devoting our year to the TakeCHARGE Campaign, 5 Steps to Safer Health Care. These 5 Steps encourage people to be responsible for their own safety. These 5 Steps are written about in journals and in the media but not together, as the Campaign suggests. This year — while we are not competing with clinicians in helping people improve their health — our focus is and always has been on the health CARE we receive.
Since 1996 we have built a long record of accomplishments including our Professionals for Patient Safety (PPS) meetings that have occurred monthly since 2014. Other initiatives include Family Centered Patient Advocacy, an 8-hour class developed and offered since 2006 for the public to learn to be patient advocates for their loved ones, or to prepare for a career in advocacy; Patient Activation through Community Conversation (PACC), facilitated discussion groups about using the healthcare system; and now with TakeCHARGE, we hope to raise awareness from coast to coast including everyone in between, to help each other TakeCHARGE of our own health CARE. We hope you will consider supporting this effort through corporate sponsorships, grants and donations that make our lifesaving work possible.
With love and devotion,
Ilene Corina, BCPA