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Transforming the Patient Experience: Insights from Patient/Family Advisors

By Maureen Bisognano | Friday, November 22, 2013

The following excerpts were written by patient or family leaders/advocates who shared their insights from the Person- and Family-Centered Care: Transforming the Patient Experience seminar in Chicago, Illinois, on October 15–16, 2013.


The crucial role of leadership in transforming the patient experience was a central theme noted by a number of patient family advisors who attended the seminar.

• Jesse Bernstein, an experience advisor at St. Joseph Mercy Health System in Ann Arbor, Michigan, felt that the efforts at St. Joseph compared favorably with other successful patient- and family-centered care (PFCC) initiatives. As he observed, “[Our] executive leadership provides strong hands-on support” for patient- and family-centered care. He reported that the St. Joseph CEO and other top executives attend patient and family advisor council meetings and make sure that advisors are asked to present their stories at resident orientation, new staff orientation, first year seminars, and leadership and department retreats and planning sessions.

• According to Doris Grant, volunteer patient advocate at Maury Regional Medical Center in Columbia, Tennessee, “Senior leadership support is essential and the patient-centered care model must be incorporated into the organization’s strategic plan to ensure success.”

• Steven Duty, patient advocate at Logan Regional Medical Center in Logan, West Virginia noted that to deliver the highest level of safe, reliable care “engaging leadership is crucial” because it “defines the vision.”


Many of the patient family advisors wrote about the culture change needed to truly transform the patient experience.

• Lisa Freeman, a board member from the Connecticut Center for Patient Safety and patient advisor from Patient Advocacy of Connecticut, stated that “change is not about isolated practices, it is about culture change that comes from the top. It can be bolstered by using available resources and existing data from surveys like HCAHPS, and by input from patient and family advisory councils. There are already many systems where person- and family centered care has made a difference. Sharing their successes allows those who are just transitioning to be led by example.“

• Chrissie Blackburn, patient advocate at Rainbow Babies & Children’s Hospital in Cleveland, Ohio, was struck by IHI’s philosophy of calling patient centeredness “Person- and Family-Centered Care” because “the word ‘person’ is broad enough to cover everyone, including patients, physicians, nurse administrators and leadership. It is a culture change that must have the input of all persons involved.”

• According to David Cohen, patient advocate from Fox Chase Cancer Center in Philadelphia, creating and sustaining a PFCC culture is important to the success of transforming the patient and family experience. It is accomplished, he wrote, “through having a clear, action-oriented and pervasive practice or set of behaviors that provides a foundation for partnering with patients and families, actions that will assure optimal patient experiences and an ongoing commitment to patient- and family-centered care.”

• Sarah Harris Barry, patient advocate at Maury Regional Medical Center in Columbia, Tennessee, wrote, “The days of random acts of kindness are over. There needs to be a clear vision for culture and behavior changes. We must recognize that these are the early days. Many health care professionals do not believe that the patient experience is a part of their job. We must usher in a new era of partnerships between clinicians and individuals where the values, needs and preferences of individuals are honored using best practices with a shared goal that is optimal for a functional health care environment.”


Attendees noted optimism regarding the potential for partnerships between health care providers and patients and families to improve health care.

• Gail Panoff, patient advisor and chair of the patient and community engagement council at St. Joseph Mercy Health System in Ann Arbor, Michigan, found it heartening that “the medical community is truly embracing [patients] as true partners in transforming patient-centered care.”

• Chrissie Blackburn of Rainbow Babies & Children’s Hospital, noted, “I realize the more I get involved in the work of patient and family engagement that it is not just about patients and families, but also how we can engage medical and frontline staff in the enhancements and changes that are occurring in the culture of health care.”

• According to Steven Duty of Logan Regional Medical Center, “Clear, action-centered, and persistent practices or behaviors provide a foundation for partnering with patients and their families” and pointed to Always Events as a helpful strategy for creating these.

• Bob Hallman, a patient and family advisory council member at Southern Hills Hospital & Medical Center, in Las Vegas, Nevada, noted that to help ensure “a successful outcome of any procedure, there must be total collaboration between doctor, hospital leadership/staff, patient and family.”

Notable Quotes

A number of the patient family advocates shared some quotes that resonated with them after the seminar.

• Doris Grant of Maury Regional Medical Center quoted Catherine Lee, Vice President, Service Excellence at McLeod Regional Medical Center who stated, “We are really good about caring what [patients] think of us. We are not good about caring what [patients] think.”

• Sarah Harris Barry of Maury Regional Medical Center quoted Laura Gilpin of Griffin Hospital: “What patients want is not rocket science, which is really unfortunate because if it were rocket science, we would be doing it. We are great at rocket science. We love rocket science. What we’re not good at are the things that are so simple and basic that we overlook them.”

All Teach, All Learn

The value of learning from others—both fellow patient family advisors and health care professionals—was another common experience.

• Gail Panoff of St. Joseph Mercy Health System found it “very advantageous to engage and share knowledge from professionals of senior, mid-and front-line leaders as well as other advisors.”

• “Attending this conference,” Steven Duty of Logan Regional Medical Center noted, “took the spark that was recently ignited in my heart as a patient advocate, turned it into a flame, and provided me with a burning torch. It brought me and my experiences together with like-minded people. Furthermore, networking throughout this event brought out a sense of purpose and connection with others’ passion, so that together we can transform the patient experience in health care across America and around the world.”

Next Steps

How did the IHI Person- and Family-Centered Care: Transforming the Patient Experience seminar influence the patient family advisors who attended and what do they want to do next?

• Jesse Bernstein is eager to propose the idea of “buddy rounding” at St. Joseph. According to Bernstein, “Rounding is an important element of management and leadership at St. Joe’s. We are excited about the concept of buddy rounding—having an Experience Advisor round with an executive.” In Chicago, the St. Joseph team developed a timetable “to gather information about the scheduling and workings of executive rounding, develop a buddy rounding plan, and get the plan approved and implemented by the executives and Council.”

• Lisa Juliar, a Minnesota Hospital Association patient advisor, described the seminar as an “opportunity to gather with a group of like-minded, passionate professionals and patients” as having a great impact on her “heart, mind and soul.” The experience, she noted, left her with “an intensified desire to transform health care in ways that will allow patients and family members to be meaningful partners in their care.”

• As a result of the seminar, Teresa Younkin, a patient advocate from Danville, Pennsylvania, wants care providers to conduct bedside huddles “to allow patients and family members the opportunity to be involved in the conversation,” especially with regard to information that should be included in the electronic  health record. Patients and families can help ensure better quality data is entered into personal health records. “When good quality data is available about a patient,” Younkin asserts, “health care organizations can use the data to create information which can be used to lower costs and help drive better outcomes.”

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