Patient and Family Advisory Councils – The Importance of the Patient Voice in Our Safety and Quality Work

Patient and Family Advisory Councils are forming in many hospitals across the country. Some institutions, like the Dana Farber Cancer Institute and Cincinnati Children’s Hospital have had “Patient Partnership” Council’s in place for over a decade, inviting the patient into healthcare decision-making and strategic planning, setting examples for those just starting the process. Aurora Health in WI, who received AHRQ funding to look at best practices around the formation of a Patient Safety Advisory Council for outpatient medication safety has provided guidelines for all to follow if they so desire to set up their own Patient Advisory Council.

But with many now rushing to engage patients, a few leading patient advocates have become a bit skeptical. Engaging patients is more than just addressing the call from the Institute of Medicine in their September report. It’s more than gathering people in a boardroom, serving lunch and feeling good about ourselves. It’s more than just checking the patient council box when the Joint Commission comes visiting. And it’s more than just asking patients about hospital room colors. It’s about true partnerships that define, and then measure, patient safety and quality improvement outcomes from projects that directly result from the time invested in these types of meetings.  When done correctly, these partnerships become powerful and lead to positive changes in a number of areas. The culture of medicine is in transition, and like any industry, changing culture takes time, courage and the ability to take action outside our normal comfort zones.

This week, I had the great pleasure of spending time with a number of leading patient advocates – people who have devoted their careers to helping patients, caregivers and health systems better understand what is needed to lower risk and improve quality in patient care. Many are good friends and have been personal mentors to me through the years. People like Helen Haskell, Carole Hemmelgarn and Patty Skolnik, three remarkable women who continue to share their personal stories of loss so others can learn, and make care safer.  People like Rosemary Gibson, Michael Millenson, Sorrel King and Victoria Nahum who have touched us all through their writings, educational materials and collective call for change.  They have graciously agreed to help us at MedStar Health better understand and appreciate what terms like patient-partnership, shared decision-making, and transparency really mean to our patients. Their definitions and perspectives can be quite different at times from those I have thought were correct and published in the literature through the years. Many times I think I get it, only to realize that “I don’t know what I don’t know”. Tim McDonald, a good friend, mentor and patient safety leader, always likes to say we can be “unconsciously incompetent” when describing this phenomena.

We all met as a group last week, and the conversation took on a life of its own. With the advocates asking the tough questions, the conversation and discussions evolved organically and led to the open, honest discourse we all know is critical if real change has a chance to occur. Rosemary challenged the leadership in the room to measure our success by striving for the day when every healthcare provider working in our system was one that we as caregivers would refer a family member to – no hidden secrets on who we know is good, and who we would take our loved ones to for care. A second recommendation focused on outcomes data, and how to present it in a meaningful way–in a way that patients could truly understand, and then use it for decision-making. And more than one of our advocates implored us to create educational tools that patients could not only use to guide them through their hospital stay, but also make it clear they were a welcome and engaged part of the care team. Many health systems like MedStar already have different patient educational tools in place, but the group pushed us to think differently and be even more innovative in our approach to patient education.

The day ended with excitement around the different opportunities to create change right in front of us, and in fact, work has already begun on more than one consensus recommendation resulting from the meeting. We all look forward to the continued sharing of ideas with our council members, and graciously thank them for their insight and resolve to push us past our limits in the best interest of our patients.