Evidence map›Paper›PMID 39067867›Full record

ArticleBMJ open quality2024

Interventions to improve system-level coproduction in the Cystic Fibrosis Learning Network.

Breck Gamel, Dana Albon, Srujana Bandla, David W Davison, Jonathan Flath, Kathryn A Sabadosa, Michael Seid, Lindsay Silva, Thida Ong, Cystic Fibrosis Learning Network Group

Abstract read
In one paragraph

Article in BMJ open quality, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. The globalization of cystic fibrosis care.Current opinion in pediatrics · 2025
    Review
  2. A Qualitative Study to Improve How We Partner With Patients and Families in Healthcare Improvement Collaboratives.Health expectations : an international journal of public participation in health care and health policy · 2025
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Breck GamelChildren's Health Cystic Fibrosis Center, The University of Texas Southwestern Medical Center, Dallas, Texas, USA.ORCID http://orcid.org/0009-0006-6130-0180
Dana AlbonUniversity of Virginia School of Medicine, Charlottesville, Virginia, USA.
Srujana BandlaCincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
David W DavisonCincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
Jonathan FlathUniversity of Minnesota, Minneapolis, Minnesota, USA.
Kathryn A SabadosaCystic Fibrosis Foundation, Bethesda, Maryland, USA.
Michael SeidPulmonary Medicine and Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital, Cincinnati, Ohio, USA.ORCID http://orcid.org/0000-0001-9773-9263
Lindsay SilvaDoernbecher Children's Hospital, Oregon Health & Science University, Portland, Oregon, USA.
Thida OngPediatrics, University of Washington, Seattle, Washington, USA thida.ong@seattlechildrens.org.
Cystic Fibrosis Learning Network Group

Funding

UAB CF Research and Translation Core CenterP30DK072482 · NIDDK · UNIVERSITY OF ALABAMA AT BIRMINGHAM · PI Susan Elizabeth Birket · 2007 to 2026
$23.0M
PEDSnet Scholars: A Training Program for Pediatric Learning Health System ResearchersK12HS026393 · AHRQ · CHILDREN'S HOSP OF PHILADELPHIA · PI FORREST, CHRISTOPHER B, MOON, JEANHEE · 2018 to 2022
$4.0M
AHRQ HHS K12 HS026393NIDDK NIH HHS P30 DK072482
6 · The paper itself

Abstract

backgroundCoproduction is defined as patients and clinicians collaborating equally and reciprocally in healthcare and is a crucial concept for quality improvement (QI) of health services. Learning Health Networks (LHNs) provide insights to integrate coproduction with QI efforts from programmes from various health systems.

objectiveWe describe interventions to develop and maintain patient and family partner (PFP) coproduction, measured by PFP-reported and programme-reported scales. We aim to increase percentage of programmes with PFPs reporting active QI work within their programme, while maintaining satisfaction in PFP-clinician relationships.

methodsConducted in the Cystic Fibrosis Learning Network (CFLN), an LHN comprising over 30 cystic fibrosis (CF) programmes, people with CF, caregivers and clinicians cocreated interventions in readiness awareness, inclusive PFP recruitment, onboarding process, partnership development and leadership opportunities. Interventions were adapted by CFLN programmes and summarised in a change package for existing programmes and the orientation of new ones. We collected monthly assessments for PFP and programme perceptions of coproduction and PFP self-rated competency of QI skills and satisfaction with programme QI efforts. We used control charts to analyse coproduction scales and run charts for PFP self-ratings.

resultsBetween 2018 and 2022, the CFLN expanded to 34 programmes with 52% having ≥1 PFP reporting active QI participation. Clinicians from 76% of programmes reported PFPs were actively participating or leading QI efforts. PFPs reported increased QI skills competency (17%-32%) and consistently high satisfaction and feeling valued in their work.

conclusionsImplementing system-level programmatic strategies to engage and sustain partnerships between clinicians and patients and families with CF improved perceptions of coproduction to conduct QI work. Key adaptable strategies for programmes included onboarding and QI training, supporting multiple PFPs simultaneously and developing financial recognition processes. Interventions may be applicable in other health conditions beyond CF seeking to foster the practice of coproduction.

Indexed as

Cystic FibrosisQuality ImprovementFemaleHumansLearning Health SystemMalecommunity-based participatory researchhealthcare quality improvementpatient-centred carepatient participationteamwork

Identifiers

PMID39067867
PMCPMC11287073

What OpenQuestion holds

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LicenceCC BY-NC
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.