21 May 2015

Activating People and Families Living with Cystic Fibrosis in CF Care

There is a change going on in healthcare towards patient-centered care.  This is also happening at the Cystic Fibrosis Foundation.  And it's revolutionizing the way we do health care.

One of the signs I see this in my life is in my role as co-chair of my local CF Clinic's Parent Advisory Council (PAC).  The goal of a CF Patient Advisory Council is to allow patients and parents to partner together with their CF Clinicians on improving CF Care through our CF Clinic.  

Each month, I drive four hours round trip to up Dallas in an effort to partner with other CF parents and Bennett's CF Care Team to make sure he, and the other patients at Dallas Children's Medical Center's CF Clinic, get the best of care.

Next week, I will meet again with a group of CF clinicians, researchers, CF Foundation leaders, caregivers and patients for the second CF Care Model of the Future Design Meeting in Bethesda, MD.  Along with our workgroup, I will help present several aspects of a new vision we have for patient-centered CF care, with regard to 
CF Center Accreditation and within Patient and Family Advisory Councils.  

I wanted to share a document that I came across while working with the CF Model Design workgroup on patient-centered CF care. 

I found this timeline to be very interesting so I wanted to share with other CF parents/patients.
The document copied below shows a timeline of how the CF Foundation has moved towards having CF families more involved in what they are doing on the national level.  

I'll share more on this topic soon.  But in the meantime, I'd love to hear what others think about patient-centered CF care and ways we might better appreciate the CF patient/caregiver voice.

"Activating People and Families Living with Cystic Fibrosis in CF Care" 
Authored by Leslie Hazle, Kathy Sabadosa, Terri Schindler and Karen Homa

National quality improvement (QI) initiative launched to extend life expectancy through consistent implementation of evidence-based care.

Parents and patients join CF center care staff at Cincinnati Children?s Medical Center as part of the Robert Wood Johnson Foundation's Pursuing Perfection initiative to improve care.


National QI collaborative actively engages CF care centers, patients and families in learning how to partner and  improve CF care.

Parents of a child with CF and an adult with CF join the CF Foundation's Education Committee.


Strategic planning to set QI Worthy Goals with a primary goal includes patients and families as full members of the care team.

Patient Registry Report links health outcomes to national QI initiative goals.


Web cast highlights Cincinnati Children's CF Center partnership with parents to improve CF care.


CF Foundation publishes all accredited care centers health outcomes on

"Action Guide for Accelerating Improvement in Cystic Fibrosis Care"published and distributed to accredited CF care centers, features engagement of patients and families.


CF Foundation publishes the "Improve your CF Care" toolkit written by and for patients and parents on


Patients and families are included on practice guidelines steering committee and working groups.


CF Foundation's published strategic objectives include: "Deliver high-quality, compassionate
patient and family-centered care through our Care Center Network" and "Help patients and their families find new ways to improve their self-management skills."


First Patient and Family Advisory Board Track offered at the North American CF

Development of a National Patient and Family Experience of Care Survey is initiated.

First year-long QI collaborative focused on adult care is launched.


Patient and Family Experience of Care survey piloted at 25 CF Care Centers.


Patient and Family Experience of Care Survey administered at CF Care Centers undergoing CF Foundation accreditation site visits.

The CF Foundation begins supporting video conferencing in it's efforts so CF adult patients can be involved.

The CF Foundation updated their infection prevention and control guidelines in the spring of 2013 based on research that was also released in 2013.

The CF Foundation creates the CF Adult Advisory Council, which 
was identified as a priority in the strategic plan.

The CF Foundation ends the "Patient and Family Advisory Board Track" at the North American CF Conference, specifically for patients and families.  Instead, the CF Foundation invites CF Advisors/patient families to attend the entire North American CF Conference, reducing the cost for CF Advisors to make it more affordable for CF families to attend.  In addition, the CF Foundation announces it will live-stream portions of the CF Conference for CF families and patients to be involved remotely.

Patient and Family Experience of Care Survey administered at all CF Care Centers.  Every individual and family with CF will be asked to complete a survey every 6 months.  Prior to 2015, the survey was only administered to centers that were scheduled for accreditation site visits by the CF Foundation.

The CF Care Model Design Project and Coproduction Pilot Project launched to develop and implement plans so that all people with CF have access to high-quality, specialized and accredited CF care centers and prescribed therapies.

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