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Cystic Fibrosis Patient and Family Advisory Board

The Patient and Family Advisory Board (PFAB) serves as an advisory resource committee in partnership with the St. Luke's Cystic Fibrosis Center of Idaho. Its purpose is to provide a diversity of perspectives in matters relating to the provision of medical care to children and adult patients with cystic fibrosis (CF) in an effort to enhance support, quality, safety, experience of care, and promote the value of clinical research.

PFAB Helps Us Improve Patient Care and Experiences

  • “You can make a real difference in how care is provided for you or your loved ones at the cystic fibrosis clinic. You can present your ideas and thoughts, feel that you have been heard, and see change in action as they materialize into reality in clinic. It’s a great experience, and get to meet with other people who are in the same situation as you and want to make a difference, too.” – Sonja
  • “CF has a tendency to isolate, steal away connections with others like you, be you a person with CF, a parent or guardian, a spouse, a sibling, etc. PFAB can reconnect you and allow you to engage and help others with their battles, big and small. You will have the opportunity to improve clinic experiences by offering suggestions, brainstorming solutions to obstacles and otherwise advocating for patients and caregivers. You will have the ability to frame discussions, learn more about clinic processes and research, and help shape how care should be delivered. You get to contribute to bettering the quality of life for those connected to the CF clinic.” – Andrea 

Goals

  • To improve quality of life of people with cystic fibrosis (CF)
  • To offer ideas and suggestions regarding the policy and practice that affect patient-centered care
  • To review recommendations and concerns as identified by patients, caregivers, staff, physicians, or administration
  • To serve in an educational role, as needed or requested, regarding patient/caregiver perception of care and services
  • To assist in the planning of new services as requested by the St. Luke's Cystic Fibrosis Center of Idaho clinical staff
  • To serve as advocates for the patients and caregivers

PFAB Projects

Completed

  • Charter development for PFAB group
  • Efforts to improve ED care
    • Letter to ED from PFAB group
    • Sumtotal CF module for all employees
  • Infection control
    • Obtain more and move Kleenex/mask towers to all entrances of CSC
  • CF diet implementation in the inpatient setting
  • Contributed to developing CF Center of Idaho website
    • Layout
    • PFAB page
  • Patient night out
  • Patient education documents
  • Participation in center QI projects
  • Participation in Center accreditation process
  • PFAB representation at NACFC
  • Drafted Mental Health Guideline letter to patient and family
  • Annual participation in fundraising efforts
    • Pub crawl
    • Pie day
    • Hockey night with the Steelheads
    • Basketball night with the Stampede
    • Great Strides

In Progress

  • Center QI projects
    • Labs in clinic
    • Increased FEV1 in 6-12 year olds
  • Clinic process/flow
  • CF education day/Family night out recruitment
 

If you're interested in joining the Cystic Fibrosis Patient and Family Advisory Board, please call (208) 381-7092.

  • Facilities & Locations

Our goals are to optimize health and improve quality and length of life for children and adults living with CF through top-quality healthcare and education.


  • Location & Contact Info

    610 W. Hays Street
    Boise, ID 83702
    (208) 381-7092