How patients engage in the healthcare system continues to evolve. It is no longer passive and paternalistic, or silence and acceptance. Patients and families are learning they have a voice, a powerful voice, and they are speaking up and out.
Carole Hemmelgarn
Senior Director, MedStar Institute for Quality and Safety; Founding Member, Patients for Patients Safety
What is changing? One thing is that technology has leveled the playing field and provides patients and families with knowledge, so when they see their healthcare providers, they are informed and can ask questions.
Patient engagement at the point of care is becoming more inclusive of patient and family values, preferences, and beliefs. The conversations are becoming bi-directional, encompassing shared decision-making, and inclusion in bedside rounds and end-of-life decisions.
While this is all important in moving healthcare forward at the individual level, it’s what patients and families are doing at the local, state, and federal levels for patient safety that is creating the revolution in healthcare.
In 2022, a group of patient activists from Patients for Patient Safety US authored an article titled “Who Killed Patient Safety?” They were frustrated with the drift they saw in patient safety from organizations at the federal level, and also called out other leaders in the patient safety ecosystem.
Since that article, there has been a resurrection of patient safety within many of these organizations.
Will these patient activists get any credit for the call out, and the revival of patient safety? Likely not. But their paper continues to have a life of its own, being discussed at conferences, in presentations, and behind closed doors.
What these activists wanted, and they achieved, was the heartbeat of patient safety brought back to life and pumping again.
A seat at the table
Patients and families have evolved from having a seat in the back of the room, to sitting at the table, being heard, and now shaping the patient safety landscape. They have appointments, sit on committees, and are placed on boards at organizations like the Centers for Disease Control, Agency for Healthcare Research and Quality, Institute for Healthcare Improvement, American Board of Internal Medicine, Leapfrog Group, and state health departments.
They participate in developing healthcare measures and in the approval process of these measures along with researchers, physicians, measure developers, and governmental members. They are designing and leading research projects and are no longerjust an afterthought to check a box to say they have patients involved in the process.
They are publishing papers on their own without having a physician’s name on the paper to be credible. They are empowered to be at the forefront of healthcare and not a passive recipient of healthcare.
Course correction
Healthcare has had a long history of trying to fix itself and it is not working. It continues to learn from other industries, but the uptake has been slow.
However, healthcare has not tapped into its most vital resource, and that is patients and families. These are the individuals who use healthcare’s services every minute of every day.
Patients and families see things through fresh eyes, different perspectives, and professional life experiences. They are the future evolution for patient safety. They are the moral compass, the ethical beacon, and the ones who have been devasted by harm.
Patients and families have the resiliency and tenacity to stand up, speak out, and give back so that healthcare is a safer place for all.