BMJ Open Quality (Jul 2024)

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

  • ,
  • Rachel Gordon,
  • Lillian O’Leary,
  • Gregory Sawicki,
  • Don B Sanders,
  • David Miller,
  • Peter J Murphy,
  • Michael Seid,
  • John Dickinson,
  • Mary Lester,
  • Catherine Hopkins,
  • Adrienne Savant,
  • Rebekah Brown,
  • Preeti Sharma,
  • Christian Merlo,
  • Michelle Roberts,
  • Kathryn A Sabadosa,
  • David Hansen,
  • Peter Michelson,
  • Amy Filbrun,
  • Jordan Dunitz,
  • Christopher M Siracusa,
  • Thida Ong,
  • Stacy Bichl,
  • Ahmet Uluer,
  • Joanne Cullina,
  • Michael Powers,
  • Rhonda List,
  • Lindsay Somerville,
  • Lauren Williamson,
  • Dana Albon,
  • Hossein Sadeghi,
  • Clement Ren,
  • Thomas Keens,
  • Nicholas Antos,
  • Fadi Asfour,
  • Mike Price,
  • Kristen Nowak,
  • Robert Balk,
  • Erin Moore,
  • Prigi Varghese,
  • Cori Daines,
  • Glenda Drake,
  • Amy Lucero,
  • Amanda Sharpe,
  • Lindsey McMahon,
  • Meghan Murray,
  • Meghana Sathe,
  • Traci Liberto,
  • Rachel Linnemann,
  • Pornchai Tirakitsoontorn,
  • Maivy Sou,
  • Michael Schechter,
  • Andrea Molzhon,
  • Karen Wunschel,
  • Lisa A Mullen,
  • Kyle Traver,
  • Travis Burgett,
  • Alex Gifford,
  • Nicola Felicetti,
  • Heidi Dolan,
  • Tracey Gendreau,
  • Danielle Beachler,
  • Shine-Ann Pai,
  • Stephanie Robbins,
  • Ben McCullar,
  • Lauren Mitchell,
  • Andrew Scaljon,
  • Stefanie Rushing,
  • Golnar Raissi,
  • Bean Corcoran,
  • Michelle Prickett,
  • Rachel Nelson,
  • Stacy Allen,
  • Lisa Greene,
  • Sara Renschen,
  • Betsy Price,
  • Catherine Kier,
  • Teresa Carney,
  • Sandy Corr,
  • Barbara Leyva,
  • Jillian Salvatore,
  • George M Solomon,
  • Julianna Bailey,
  • James Lawlor,
  • Samya Z Nasr,
  • Rebekah Raines,
  • Catherine Enochs,
  • Kristen Jesse,
  • Jonathan Flath,
  • Mackenzie Wharram,
  • James Tolle,
  • Susan Eastman,
  • Nauman Chaudary,
  • Mahsa Farsad,
  • Kimberly Wingo,
  • Kathryn Moffett,
  • Erin Brozik,
  • Paige Krack,
  • Kevin Martin,
  • Laura Roth,
  • Joshua Wang,
  • Sarah Dykes,
  • Erin Newbill,
  • Misty Thompson,
  • Danielle Poulin,
  • Breck Gamel,
  • Srujana Bandla,
  • David W Davison,
  • Lindsay Silva,
  • Raouf Amin,
  • Maria Britto,
  • Anna Saulitis,
  • Kate Barnico,
  • Cindy Murphy,
  • Amanda Lemieux,
  • Georgia Dangel,
  • Melanie Lawrence,
  • Danielle Goetz,
  • Danielle Woerner,
  • Megan Whelan,
  • Katelyn Violanti,
  • Susan Attel,
  • Alexia Hernández Cargal,
  • Kelly Clute,
  • Olivia Ries,
  • Susan Gage,
  • Bridget Kominek,
  • Kristin Lawrence,
  • Megan Martin,
  • Jessica Roach,
  • Errin Newman,
  • Phillip Vaden,
  • Esther Giezendanner,
  • Marsha Triana,
  • Sujal Rangwalla,
  • Meghann Weil,
  • Randy Hunt,
  • Emily Walker,
  • Caroline Starnes,
  • Kendra Adderhold,
  • Megan Barker,
  • Johanna Zea-Hernandez,
  • Beth Debri,
  • Ann Kaiser,
  • Cindy Brown,
  • Pi Chun Cheng,
  • Jana Yeley,
  • Laura Jay-Ballinger,
  • Julian McConnie,
  • Meghana Malapaka,
  • Perry Aulie,
  • Ginger Birnbaum,
  • Cynthia Driskill,
  • Janerisa Encarnacion,
  • Amanda Oswald,
  • Stephanie Fullmer,
  • Anthony Fashoda,
  • Laura Steinhaus,
  • Maureen Tinley,
  • Jame’ Vajda,
  • Janine Cassidy,
  • Mey Lee,
  • Megan Akers,
  • Susan Whitmore,
  • Christian Santaniello,
  • Robert Abdullah,
  • Bryan Garcia,
  • Cameron Crenshaw,
  • Kandice Amos,
  • Veronica Indihar,
  • Lisa Shively,
  • Anissa Hostetter,
  • Angela Oder,
  • Brandi Morgan,
  • Kayla Hubley,
  • Deborah K Froh,
  • Holly Carroll-Owen,
  • Lauren Miller Ahrens,
  • Brielle Evangelista,
  • Lucy Gettle,
  • Tracie O'Sullivan,
  • Autumn Bonstein,
  • Stacey Miller,
  • Angela Bender,
  • Billie Jo Bennett,
  • John Palla,
  • Cathy O'Malley,
  • Maria Dowell,
  • Allison Fitch-Markham,
  • Chladd Ford,
  • Carolyn Heyman,
  • Terri Laguna,
  • Debbie Benitez,
  • Lynn Fukushima,
  • Martha Markovitz,
  • Adupa Rao,
  • Gregory Storm,
  • Vai Jun Lam,
  • John Mercer,
  • Cori Muirhead,
  • Jeff Gold,
  • Aaron Trimble,
  • Gopal Allada,
  • Wendy Palmrose,
  • Sue Sullivan,
  • Kim Keeling,
  • Rob Shradar,
  • Jill Fliege,
  • Heidi Klasna,
  • Janelle Sorensen,
  • Stacy Millikan,
  • Joe Poler,
  • Jill Rollins,
  • Sandy Wahl,
  • Cristy Batten,
  • Laura Romero,
  • Whitney Gore,
  • Kimberly Morse,
  • Rocio Munter,
  • Danieli Salinas,
  • Sylvia Sanchez,
  • Virginia Anderson,
  • Jami Dunn,
  • Stephanie Gamble,
  • Hector Gutierrez,
  • Kelli Lachowicz,
  • Isabel Lowell,
  • Cathy Mims,
  • LaShonna Stodghill,
  • Gabriela Oates,
  • Amanda Phillips,
  • Linda Russo,
  • Staci Self,
  • Julie Desch,
  • Ilene Hollin,
  • Emily Kramer-Golinkoff,
  • Pamela Mertz,
  • Sarah Gomez,
  • Nancy Griffin,
  • Drew Warmin

DOI
https://doi.org/10.1136/bmjoq-2024-002860
Journal volume & issue
Vol. 13, no. 3

Abstract

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Background Coproduction 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.Objective We 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.Methods Conducted 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.Results Between 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.Conclusions Implementing 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.