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The Cystic Fibrosis Learning Network: A mixed methods evaluation of program goals, attributes, and impact.
Aricca D Van Citters1, Madge E Buus-Frank1,2, Joel R King1
1The Dartmouth Institute for Health Policy and Clinical Practice Geisel School of Medicine Lebanon New Hampshire USA.
Learning Health Systems
|September 21, 2023
Summary
The Cystic Fibrosis Learning Network (CFLN) enhances patient outcomes by fostering quality improvement (QI) and collaboration. Further spread of the CFLN may improve care for more individuals with cystic fibrosis.
Area of Science:
- Health Services Research
- Quality Improvement Science
- Patient Outcomes Research
Background:
- The Cystic Fibrosis (CF) Foundation established the CF Learning Network (CFLN) to transform its Care Center Network (CCN) into a learning health system.
- A mixed-methods evaluation was conducted to assess the CFLN's goals, attributes, and impact six years post-implementation.
Purpose of the Study:
- To evaluate participants' understanding of CFLN goals and attributes.
- To assess the perceived current and future impact of the CFLN.
- To determine if CFLN-identified themes were unique compared to the broader CCN.
Main Methods:
- Semi-structured interviews were conducted with 24 CFLN participants.
- Thematic analysis of interviews informed survey development.
- A survey was distributed to 103 CFLN members and 25 matched CCN program members.
Main Results:
- The primary CFLN goal identified was improving outcomes for people with CF.
- Key success factors included project management, data utilization, QI methods, and a learning community.
- CFLN members reported greater engagement in inter-program collaboration, data-driven QI, and patient/family involvement compared to CCN members.
Conclusions:
- The CFLN demonstrates value beyond the standard CCN.
- Further research is needed to determine the impact of spreading the CFLN model to improve outcomes for more individuals with CF.
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