[MUSIC] Hi, my name is Sue Mead. And I'm a parent advisor to the Children's Center. My daughter was successfully treated here for a brain tumor 11 years ago. I'm a founding member of the Pediatric Family Advisory Council, Hopkins' first council which began in 2007. I'm going to share with you some basic information on patient and family advisory councils. First, a patient and family advisory council is made up of front-line staff, leadership, and patients and their families. Our council partners patients and families with members of the healthcare team to provide guidance on how to improve the patient and family experience. So what does this really mean? A council serves as a formal mechanism for involving patients and families in policy and program decision making. The council has a structure, by-laws and, set leadership. Advisors are interviewed, and once selected, go through the mandatory volunteer training, which includes HIPAA and confidentiality training. Advisors must attend an advisor orientation training session before they can attend monthly council meetings. We come to share our lived experience and talk about things that went well during our stay and things that could be improved. The council is not a support group or a place to share your grievances, but rather a place to work on ways to improve the healthcare experience for the next patient and family. We currently have six councils at Johns Hopkins Hospital, four in adult and two in peds, which includes a teen and children's council. In addition to the paid staff that supports the work of creating and sustaining patient and family-centered care, at Johns Hopkins Medicine, we have 17 patient and family advisory councils comprised of patient and family volunteers, along with hospital leadership and coordinating staff. Throughout our system, PFAC leadership is represented on key committees, including the quality and safety arm of the board of directors. All of the patient and family advisory councils collaborate across the health system, in what we call a clinical community, where we set shared goals and best practices. What do I and other volunteer advisors do? We identify best practices here and at other institutions and advocate for them. We work in an advisory role and represent our families on hospital committees and at the council level, as to what it is really like to be the patient or a parent or family member of a chronically ill patient in your hospital. We support patient and family-centered care activities and programs, such as peer-to-peer mentoring, which matches newly diagnosed families to veteran families who have been trained on how to provide emotional support. We represent patients and families on hospital committees, such as patient safety and quality improvement, the patient experience collaborative, infection control, and patient education. We educate, we speak to faculty and staff as to what it is like to have a family member in the hospital. Advisors have spoken at resident orientation, nursing orientation, new employee orientation and the like. Our advisors bring their unique perspective and experience to our monthly meetings, as well as the committees on which they serve. They represent the voice of patients that may otherwise be missed in daily staff operations. We strive to capture a diverse and inclusive patient voice on our councils that is representative of the patients we serve every day. A great example of the patient and family advisory council work is a new patient handbook. Our advisory councils recognized that the existing patient handbook was not patient and family friendly. Working with our PFAC, marketing staff, admissions team, nurses, and patient experience team, we've developed a new user-friendly source. This screenshot from the handbook demonstrates the input of our council members who shared with us the most important information they need to know during their stay. In response to the needs identified by our patients around orientation to the room, we developed the warm welcome. And to help patients understand their care on discharge, we put together the fond farewell. This was developed by our front-line staff, customer service coordinators, concierges, and our patient and family advisory councils. We recognize that not all patients and family members can commit to monthly meetings and committee involvement, though we are constantly seeking to increase the number of advisors on hospital committees. However, we want to ensure that we include a diverse patient voice in all that we do. The patient and family cafe concept was developed by a patient advisor. The cafe is a one-time event where we invite patients to join us for lunch or dinner and give us feedback on their care experience. Participants are welcome to join the larger advisory council if they wish. The patient and family cafe is an excellent way to engage our patients and hear their voices as we strive to improve the healthcare experience at Johns Hopkins Medicine. At our monthly meetings, our patient and family advisors are asked to give feedback on a wide variety of hospital programs and initiatives. We like to be involved in the beginning of such projects and encourage staff to include the patient and family voice from the start. Finally, patient and family advisors who serve on our many councils are asked to share their stories and orientations for residents, medical students, and nursing, to just name a few. Hearing from a patient or family what went well and what could have gone better can make a lasting impression on all healthcare providers, and can shape the patient and family-centered care they will provide. I encourage you to build robust patient and family caregiver feedback into all that you do. And I hope this introduction to patient and family advisory councils will help kickstart your efforts.
