In 2002, I was asked to organize and help individuals who had experienced negligence while getting healthcare. I had always worked on social justice issues, and began using those same organizing skills and passion to work on health justice and improving the inefficient health care delivery system. In 2005, we formed our own not-for-profit, The Connecticut Center for Patient Safety.

The experiences of our first board of directors tells a grim story. Gus became a double amputee at the age of 31 after botched “minimal” surgery. George lost a four-year-old daughter to “minimally invasive surgery” to place tubes in her ears. Steve’s wife died of an overdose at an allergy practice while her children were waiting for her. Herman’s wife was put in a permanent vegetative state by a drug-addicted doctor who had traveled from another state.

We got to work. Initially we worked on transparency legislation, but then quickly expanded to educational programs for providers. Our committee participation– both at the state and national level– seems to be growing exponentially as providers, governmental agencies and institutional systems now better understand the importance of hearing the patient voice. And that patient voice must be at the table and participate with equal power.

Our stories and our commitment are now opening doors to decision makers. It is where the patient voice deserves to be.