UF Health: Neuromedicine Interdisciplinary Clinical and Academic Program (NICAP)

UF Health’s NICAP in Gainesville, FL, includes three ambulatory clinics: Movement Disorders, Neurology, and Neurosurgery. In 2015, as the result of an IRB-funded study, NICAP began developing an Advisory Panel or Patient and Family Advisory Council (PFAC). Patients and families were recruited using a variety of methods (e.g., flyers, clinician referrals).

When the Neuromedicine Advisory Panel was formed, a structured approach was used for monthly meetings, including (1) facilitation by a trained moderator and (2) use of specific questions to elicit input from members on topics relevant to patient care provided by clinics. Before each meeting, the questions were shared and, following meetings, thematic analysis was done of the discussion. This closed-loop communication ensured that patients and families were heard and that their input informed new solutions or strategies.

As one example, the Advisory Panel identified that patient education and teaching within the clinics could be improved. One family caregiver shared a story illustrating the need, “The surgeon wrote too many refills and I assumed my husband was supposed to exhaust the prescription. Only later, we learned that he’d been taking the steroids far longer than intended.”

A teach-back protocol, specific to neuromedicine, was developed, including a checklist and patient materials. A series of PDSA (Plan-Do-Study-Act) cycles were conducted. Subsequently, CG-CAHPS (Clinician and Group Consumer Assessment of Healthcare Providers and Systems) data were tracked and showed an increase in scores in provider communication using the Teach-Back protocol (e.g., caring tone, 95%; friendly demeanor, 95%; inclusion of family, 94%).

Advisory Panel members also identified the need to address issues related to end-of-life, including advance care planning, palliative care, and hospice. In response, a Supportive Care Team program, using community volunteers, was created. The Advisory Panel helped in creating processes for the program and in vetting new materials, including a Supportive Care brochure for patients and families. Over the past two years, providers’ documentation of advance directives has increased up to 55%.

Based on the success of the Neuromedicine Advisory Panel to date, new patient and family advisors are now being added to guide other quality improvement efforts at UF Health’s NICAP clinics.