A patient advocate reflects on the legacy of Patient Safety Awareness Week and what patients and families can teach the health care system.
This is the first in a series of posts from patient advocates affiliated with the Partnership for Patients Patient and Family Engagement Network being published in recognition of Patient Safety Awareness Week 2014.
by Helen Haskell
Thirteen years ago, I picked up a magazine in a doctor’s waiting room. For those around me, it was a routine doctor’s visit. For me, nothing was routine. My 15-year-old son had died three months earlier as a result of elective surgery, and I was in a state of bewilderment that the world could continue on as though it had not really come to an end.
I was looking at the magazine because it contained an article naming the hospital where my son had died as one of the top 10 children’s hospitals in the United States. On the opposite page was an unrelated article about another bereaved mother, Ilene Corina, who had just helped pass a doctor profile law in New York. I took the magazine home. That night, on our old desktop computer, my daughter said, “Look!” It was a second article about Ilene, but this one included her e-mail address (an e-mail address, I might add, that remains in effect to this day). I wrote to Ilene and thus began my journey in patient safety advocacy.
The following year, I would see Ilene cited as the moving force behind the first Patient Safety Awareness Week, another tradition that still endures. I don’t remember being involved in the early days of this recognition week, but I do remember being amazed at its reach and proud of my friend. Even then, Patient Safety Awareness Week was recognized as a “health observance” in hospitals around the country.
NPSF and programs like Patient Safety Awareness Week were beacons to patient advocates like me because they were among the few places where patient safety seemed to actually focus on the patient. In those days, the emphasis on system failure was often interpreted to mean that patient safety was a technical problem, with a technical fix. We were all for technical fixes, but we wanted more. As family members who had tried and failed to deflect impending medical disasters, we believed fervently that patient input was the single most important factor in effecting change. But by and large we were reduced to begging outside the door. Few health care professionals seemed to understand just how remarkable it was that people who had suffered severe harm should respond by holding out their hands and offering to help.
The door began to open with organizations like NPSF, which published an action agenda for patients and families in patient safety in 2002. It was NPSF’s sponsorship that got Patient Safety Awareness Week into hospitals across the country, the impetus being the NPSF patient and family advisory council (PFAC), probably the first national PFAC in the country. As the years have gone by, these ideas have spread, but they have spread slowly. Many of the action items on the 2002 agenda are still action items today.
The past few years have seen a significant push for change, however. One of the biggest change agents has without doubt been the Partnership for Patients, the massive patient safety program begun by improvement guru, Dr. Don Berwick, during his tenure at the Centers for Medicare and Medicaid Services. The Partnership for Patients was created with patient involvement baked in, in the form of a Patient and Family Engagement Network and a Patient and Family Engagement Affinity Group for hospitals. This framework pushes out the concepts of patient-driven practice and governance to the majority of hospitals in the country.
Since its inception, Patient Safety Awareness Week has been an important symbol of hospital involvement in patient safety. It continues to be a vehicle to promote change. As we recognize its 13th anniversary, we need to remember that it is above all a product of collaboration between patient and provider, and that it is not just about safety, but about awareness of all that patients can teach health care providers about themselves.
Voice of the Patient