As a television news and medical reporter for 25 years, I'd met many people facing medical challenges. My own medical awakening came when my then-healthy father fell down the stairs at home and needed surgery on his neck. Complications, including an infection, would eventually take his life six months later.

 

Finding out that so many other families had had bewildering and unfortunate medical experiences got me thinking I could use my reporter's experience to help effect change. After working to pass two patient safety laws in my home state (Rhode Island), the Centers for Medicare and Medicaid (CMS), the National Quality Forum (NQF) and other national organizations asked me to contribute to their quality improvement work. 

 

It was around this time (2010) the Affordable Care Act (ACA) had mandated that "patient experience" become part of quality improvement efforts. But there were not enough of us "patient voices" with the availability, inclination and/or comfort level to participate in this work. To help build our numbers,  I co-founded the non-profit Patient's View Institute (PVI), training more patients and families to share their story effectively, and gathering more than 1,200 patient stories into a rich, diverse and searchable archive. PVI shared these insights in presentations nationwide and overseas. Ultimately I also wrote a book to empower patients and families to have better medical experiences. 

 

We still have a long way to go to make health care routinely functional, safe and humane. But to whatever extent patients' perspective have moved to the front burner since 2010 (more aggressive safety protocols, patient surveys and experience ratings, etc.), we can credit the many committed people on both sides of the bed rail who joined in this work, and continue to champion it today.