“These findings can serve to raise awareness of the possibilities for health care organizations just starting on this journey and as a call to action for those that are poised to expand the role that patients and families can play in their organizations.” — Kellie Goodson, MS, CPXP, Vizient performance improvement program director

Imagine you’re a patient at your local hospital. Because of your illness, you can no longer communicate or even see. A nurse comes into your room having a personal conversation on a cell phone. You are unsure who this person is and who they are talking to. It makes you uncomfortable, even scared. As a caregiver, you can try to visualize this story. But what if that actual patient shared their very personal account with you? And you hear and see the emotion and fear the patient felt as a result of the nurse's actions. There’s no more powerful lesson than a story told by someone who lives it.

There’s tremendous power and potential when patients and families serve as educators to help hospitals improve the patient experience, as well as quality and safety. But how often is that happening in our nation’s hospitals? That’s exactly what Vizient and the Institute for Patient and Family-Centered Care (IPFCC) explored in a first-of-its-kind national assessment of how hospitals leverage the knowledge and experience of patients and families to educate medical students and residents, as well as hospital staff, clinicians and leaders. The results were surprising.

Key findings

Vizient and IPFCC surveyed 67 health care organizations from across the U.S., including academic medical centers and non-academic medical centers such as teaching hospitals, community-based hospitals and specialty hospitals (e.g., children’s hospitals and cancer centers). Complete findings and insights are available in the Prevalence and Functioning of Patients and Families as Educators in Hospitals and Academic Medical Centers: A National Study.

Highlights include:

  • 54% of respondents involved patients and families when educating staff, clinicians and organizational leaders.
  • 41% of academic medical centers involved patients and families in education of students and trainees.
  • Those organizations with longer and deeper experience with patient and family advisors (PFAs) and with patient and family advisory councils (PFACs) are more likely to utilize those advisors in educational programming.
  • When it comes to involving PFAs in medical schools, the size of academic medical center is significantly associated with greater likelihood of PFA involvement in medical education.

The study also revealed needed infrastructure to support sustainable and meaningful involvement of PFAs. Examples include time and resource dedication for staff to serve as liaisons for faculty, increased training for PFAs to participate as faculty, more training for hospital leaders, clinicians, and staff to better partner with PFAs, especially in AMCs, as well as overall program evaluation and recognition.

“One of my big takeaways from this survey is the tremendous opportunity for hospitals, especially academic medical centers, to integrate patient and family advisors into the education of the next generation of health care professionals,” said Goodson. IPFCC President and CEO Beverley H. Johnson, FAAN, agrees. “Traditionally, the majority of involvement of patients and families in education programming has been limited to hospital settings,” Johnson said. “There is a need for the infrastructure within medical schools and the schools of other health professions to ensure that patient and family faculty are integrated more fully in all levels of education, including faculty development.”

Beyond advisors: three examples

Patients and families can do more than give basic feedback in meetings. They can be placed outside of traditional, conference room advisory committees and into new employee orientation programs or learning development opportunities on clinical care.

“Examples from the field show promising results and leadership is key to a sustainable process,” says Goodson “PFA voices can also spur action to deans of medical schools, chief medical officers, chief nursing officers, and all the way to the board of directors.

Example 1—An academic medical center in the upper Midwest has been integrating patients and families as faculty for over 10 years. Their doctoring program integrates patient and family partners into the four-year course by matching medical students with patient and family partners and hosting panels where patients and families share their experiences with challenging issues. For example, during year one, medical students have multiple interactions with their patient and family partner including home visits to learn what it’s like to manage their care and accompanying them to medical appointments to observe their experiences.

Example 2—Another academic medical center in the Southeast began its patient and family faculty program through a library of patient stories. The patient- and family-centered care team and the university humanities department created a workshop for patients and families to help write their stories to be recorded and housed in an online patient story library. The patient story library is available to the hospital as well as the university professors, department chairs, clinical educators, etc. who select patient stories from the library to enhance their curriculum. Additionally, patient and family faculty make themselves available for discussions with students and staff to answer any questions they may have after viewing their video.

Example 3—Finally, an academic medical school in the west created a dedicated patient and family advisory council for their medical school, separate from the hospital advisory council. The medical school advisory council provides guidance and advice to faculty who are interested in either creating new curriculum or changing existing curriculum. Advisory council members leverage their patient, caregiver or family experience while examining the curriculum, helping faculty identify new and innovative ways to teach students about patient- and family-centered care approaches.

The Vizient/IPFCC study has established national benchmark data, upon which information and evidence will continue to be built to realize the benefits of engaging patients and families as educators and faculty to teach students, trainees, clinicians, staff and leaders. 

Published: September 21, 2021