In August of 2010, Wendy Franz faced what would be a terrifying scenario for any parent. Her eight year old daughter Jordan suffered a seizure, and her doctors induced a coma. Jordan remained in the coma for eleven days, her mother waiting by her side.
It is easy to feel helpless in a situation like this: your child’s life is in the hands of strangers. As you wait in the hospital, you observe things that are working well and others that aren’t. And sometimes, like Wendy, your experience is so poignant that you think it might be helpful to others.
Patient & Family Advisory Council: The Patient Voice in Health Care
While she waited for her daughter to recover, Franz met a coordinator from the newly formed Baystate Children’s Hospital
(BCH) Patient Family Advisory Council (PFAC)
. She talked to the coordinator about her time at BCH, sharing both the positives and the negatives. A month later, she joined the PFAC. She’s been working to improve the patient experience at Baystate Health ever since.
Patient Family Advisory Councils include a diverse group of patients, family members, community members, and health care professionals who collectively represent the voice of patients and families. PFACS are present all across the Baystate system, including Baystate Medical Center, Baystate Children’s Hospital, and each of the community hospitals.
In honor of Patient-Centered Care Awareness Month, we talked with PFAC facilitators to learn about the work the PFACs do, and how you can get involved.
What makes a positive patient experience?
Across the board, PFAC facilitators said that “partnership” was the most important element of patient-centric care. “It’s hard to visualize improving patient safety, for example, without including patient voices at the table,” says Diane Thomas, Baystate’s director of patient relations and facilitator of the Baystate Medical Center council.
“Be a human first, and take care of business after."
Deb Smith, of the pediatric PFAC, adds that “listening and learning from our patients and families” is crucial, as is “communicating with compassion and empathy.”
Wendy Franz stresses empathy:" Be a human first, and take care of business after. Just because someone is a child, doesn’t mean she’s not a patient. Be human to that patient. It’s their bodies that are being treated.”
What kinds of problems can patients and families solve?
PFACs are now influencing policy at all levels. Diane Thomas cites the Caregiver ID program as a great example of PFAC success: “We identified early on, from stories, that hospital patients were confused about who their caregivers were.” People didn’t understand who was responsible for their care, and they didn’t understand the different roles within the hospital. The PFAC brought the issue to the attention of hospital leaders, and staff now wear standard attire.
The PFAC has also been instrumental in color coding parking, helping with directions and hospital wayfinding, helping to train residents on how to have hard conversations with patients, and making sure that patients have a voice and a say in their own care.
Who should join the PFAC?
Ideal candidates have “an open mind and the willingness to speak freely in a group,” says Thomas. She also emphasized that diversity is integral to the PFAC’s success, and that councils should reflect the communities they serve.
"The goal is to share your story and help us make things better."
Understanding the Baystate Health mission is a key part of being a PFAC member. “Keep in mind that we are not a support group," says Franz. "The goal is to share your story and help make things better." Thomas agrees: “You need to have the ability to see beyond your personal issues and consider differing thoughts and opinions.”
How can you get involved?
The core of PFAC work involves sharing your experience and coming up with ideas to make things better. Sharing your story is not the only way to help improve patient care. The PFAC has a number of opportunities for patients, family members, community members, and health care professionals.
Volunteers advise and mentor medical staff, speak to new residents, act as community ambassadors, attend conferences and events, and more. PFAC members are shaping the future of patient care as we speak.
Want to help? Get in touch with the Patient Experience office at 413-794-5656, or reach out to the PFAC group at the hospital near you. You are also welcome to join us for the Patient Experience Conference in Holyoke, MA on October 28th.