@article{492f203f1f4a4fe99aadf0b1fe53516a,
title = "Establishing a Cystic Fibrosis Learning Network: Interventions to promote collaboration and data-driven improvement at scale",
abstract = "Introduction: A learning health network is a type of learning health system in which stakeholders use network organization to improve health and health care. Building on existing resources in the cystic fibrosis (CF) community, the Cystic Fibrosis Learning Network (CFLN) was designed to improve medical outcomes and quality of life through an intentional focus on achieving reliable evidence-based chronic care delivery and creating a system for data-driven collaborative learning. Methods: We describe the development and growth of the CFLN considering six domains of a Network Maturity Grid: system leadership; governance and policy management; quality improvement (QI); engagement and community building; data and analytics; and research. We illustrate the impact of the CFLN experience on chronic care processes and indicators of collaborative infrastructure. Results: The CFLN represents 36 accredited care centers in the CF Foundation Care Center Network caring for over 6300 patients. Of 6779 patient clinical care visits/quarter, 77% are entered into the CF Foundation Patient Registry within 30 days, providing timely means to track outcomes. Collaborative visit planning is occurring in 93% of clinical care visits to share agenda setting with patients and families. Almost all CFLN teams (94%, n = 34) have a patient/family partner (PFP), and 74% of PFPs indicate they are actively participating, taking ownership of, or leading QI initiatives with the interdisciplinary care team. In 2022, 97% of centers reported completing 1–13 improvement cycles per month, and 82% contributed to monthly QI progress reports to share learning. Conclusion: The CFLN is a maturing, collaborative infrastructure. CFLN centers practice at an advanced level of coproduction. The CFLN fosters interdisciplinary and PFP leadership and the performance of consistent data-driven improvement cycles. CFLN centers are positioned to respond to rapid changes in evidence-based care and advance the practice of QI and implementation science on a broader scale.",
keywords = "coproduction, cystic fibrosis, learning networks, quality improvement",
author = "{the Cystic Fibrosis Learning Network} and Thida Ong and Dana Albon and Amin, {Raouf S.} and Julianna Bailey and Srujana Bandla and Britto, {Maria T.} and Jonathan Flath and Breck Gamel and Michael Powers and Sabadosa, {Kathryn A.} and Saulitis, {Anna K.} and Thomas, {Lacrecia K.} and Sophia Thurmond and Michael Seid",
note = "Funding Information: This work was funded by the Cystic Fibrosis Foundation (SEID15A0, SEID19AB0). TO was supported by the Cystic Fibrosis Foundation (CFF ONG20A0‐KB) and the AHRQ‐PCORI funded PEDSnet Scholars Training Program (5K12HS026393‐03), which is a national faculty development program that trains individuals in the competencies of learning health systems science. Cystic Fibrosis Learning Network Group information: The following physician leaders, patient and family partners, and quality improvement leaders are acknowledged collaborators in the Cystic Fibrosis Learning Network (CFLN): Cori Daines, MD, Glenda Drake, RT, Amy Lucero, (Banner Children's, Diamond Children's Medical Center, Tucson, Arizona); David Miller, MD, Amanda Sharpe (Banner University Medical Center, Tucson, Arizona); Gregory Sawicki, MD MPH, Kate Barnico, BSN RN, Rachel Gordon, MHA, Cindy Murphy, Amanda Lemieux, Georgia Dangel, Lillian O'Leary (Boston Children's Hospital, Boston, Massachusetts); Ahmet Uluer, DO MPH, Lindsey McMahon, MPH, Melanie Lawrence, Meghan Murray (Brigham & Women's Hospital, Boston, Massachusetts); Danielle Goetz, MD, Danielle Woerner, Megan Whelan PhD, RDN, CDN, Katelyn Violanti, MS RDN CDN (CF Center of Western New York, Buffalo, New York); Meghana Sathe, MD, Preeti Sharma, MD, Susan Attel, NP, Traci Liberto, Prigi Varghese, APRN CPNP (Children's Health of Dallas, Dallas, Texas); Rachel Linnemann, MD, Alexia Hern{\'a}ndez Cargal, Kelly Clute, MPA, Olivia Ries, BS MS (Children's Healthcare of Atlanta, Emory University, Atlanta, Georgia); Pornchai Tirakitsoontorn, MD, Susan Gage, Bridget Kominek, Kristin Lawrence, Danielle Poulin, MSN CPNP, Maivy Sou, MSN RN CPNP (Children's Hospital of Orange County, Orange, California); Michael Schechter, MD MPH, Andrea Molzhon, PhD, Catherine Hopkins, Megan Martin, Kevin Martin (Children's Hospital of Richmond at VCU, Richmond, Virginia); Nicholas Antos, MD, Laura Roth, CRC, Karen Wunschel (Children's Hospital of Wisconsin, Milwaukee, Wisconsin); Christopher M. Siracusa, MD, Jessica Roach, APRN, Lisa A Mullen, MHSA, Kyle Traver, Travis Burgett (Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio); Errin Newman, MD, Phillip Vaden, JD, Esther Giezendanner, MPH RD, Marsha Triana, RN (Cook Children's Medical Center, Fort Worth, Texas); Danielle Beachler, MD, Sujal Rangwalla, DO, Shine‐Ann Pai, BSRC RRT, Stephanie Robbins (Dell Children's Medical Center of Central Texas, Austin, Texas); Sarah Dykes, DNP CPNP‐PC, Ben McCullar RN BSN, Lindsay Deveaux, Meghann Weil (Doernbecher Children's Hospital, Oregon Health & Science University, Portland, Oregon); Randy Hunt, MD, Emily Walker, MS RD LD, Caroline Starnes, Kendra Adderhold, Megan Barker (Emory University Hospital, Atlanta, Georgia); Johanna Zea‐Hernandez, MD, Beth Debri, RN, Ann Kaiser (Helen DeVos Children's Hospital, Grand Rapids, Michigan); Cindy Brown, MD, Pi Chun Cheng, MD MS, Jana Yeley, NP, Laura Jay‐Ballinger (Indiana University School of Medicine, Indianapolis, Indiana); Christian Merlo, MD MPH, Lauren Mitchell, PT DPT, Andrew Scaljon, Julian McConnie, Meghana Malapaka, Perry Aulie (Johns Hopkins University, Baltimore, Maryland); Rebekah Brown, MD, Stefanie Rushing, RN MSN, Ginger Birnbaum, Cynthia Driskill CPNP (Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, Tennessee); Hossein Sadeghi, MD, Golnar Raissi, MD, Bean Corcoran, Janerisa Encarnacion (Morgan Stanley Children's Hospital (Columbia), New York City, New York); Fadi Asfour MD, Stacy Allen, Amanda Oswald, Stephanie Fullmer, NP (Primary Children's Cystic Fibrosis Center, Salt Lake City, Utah); Don B. Sanders, MD MS, Erin Newbill, RN, Misty Thompson, BS CCRC (Riley Hospital for Children, Indianapolis, Indiana); Robert Balk, MD, Anthony Fashoda, Laura Steinhaus, Maureen Tinley, Kristen Nowak, RDN (Rush University Medical Center, Chicago, Illinois); Jame' Vajda, BS, Janine Cassidy MSN ARNP PCNS‐BC, Megan Akers, Lisa Greene, Susan Whitmore (Seattle Children's Hospital, Seattle, Washington); Catherine Kier, MD, Teresa Carney, NP, Sandy Corr, Barbara Leyva, Jillian Salvatore, Michelle Roberts, Christian Santaniello (Stony Brook Children's Hospital, Stony Brook, New York); Robert Abdullah, MD (Stony Brook University, Stony Brook, New York); Bryan Garcia, MD, Cameron Crenshaw, Kandice Amos, James Lawlor (University of Alabama at Birmingham, Alabama); Veronica Indihar, MD, Lisa Shively, Anissa Hostetter, Angela Oder, MSN APRN ACHPN (University of Cincinnati Medical Center, Cincinnati, Ohio); Samya Z Nasr, MD, Rebekah Raines, Catherine Enochs, BSN RN AE‐C, Brandi Morgan, Amy Filbrun, MD MS (University of Michigan Health System, Ann Arbor, Michigan); Jordan Dunitz, MD, Kristen Jesse, RN, Kayla Hubley, RN, Mackenzie Wharram, (University of Minnesota, Minneapolis, Minnesota); Deborah K. Froh, MD, Holly Carroll‐Owen, Rhonda List, Lauren Miller Ahrens, RN BSN CPN (University of Virginia Children's Hospital, Charlottesville, Virginia); Lindsay Somerville, MD, Rhonda List, Brielle Evangelista, Lucy Gettle, Lauren Williamson (University of Virginia Health System, Charlottesville, Virginia); James Tolle, MD, Susan Eastman, FNP, Tracie O'Sullivan, Autumn Bonstein (Vanderbilt University Medical Center, Nashville, Tennessee); Nauman Chaudary, MD, Mahsa Farsad, RD, Kimberly Wingo, Stacey Miller (Virginia Commonwealth University, Richmond, Virginia); Kathryn Moffett, MD, Erin Brozik, RN APRN FNP‐BC, Angela Bender, Billie Jo Bennett (West Virginia University, Morgantown, West Virginia); Alex Gifford, MD, Nicola Felicetti, RN, MSN, Heidi Dolan, Tracey Gendreau (Dartmouth Hitchcock Medical Center, Dartmouth, Lebanon, New Hampshire); Michelle Prickett, MD, Rachel Nelson, MPH, Joanne Cullina, APRN (Northwestern University, Chicago, Illinois, USA); Stacy Bichl, APN, John Palla, MD, Cathy O'Malley, RT, Maria Dowell, Allison Fitch‐Markham, Chloe Ford, Carolyn Heyman, RN, Terri Laguna, MD (Ann & Robert H. Lurie Children's Hospital of Chicago); Debbie Benitez, APN, Lynn Fukushima, RC, Mary Lester, RT, Martha Markovitz, LMSW, Adupa Rao, MD, Gregory Storm, Vai Jun Lam, RD, John Mercer, Joshua Wang, PharmD (Keck Medicine Center of USC); Peter Michelson, Sara Renschen, Mike Price, Betsy Price (St. Louis Children's Hospital, St. Louis, Missouri); Cori Muirhead, PharmD, Jeff Gold, MD, Aaron Trimble, MD, Gopal Allada, MD, Wendy Palmrose, Sue Sullivan, RN, Kim Keeling, RT (Oregon Health & Science University); Rob, Shradar, Jill Fliege, APN, Heidi Klasna, RD, Janelle Sorensen, RN, Stacy Millikan, RN, Dave Davison, Peter J Murphy, MD, John Dickinson, MD, Joe Poler, PhD, Jill Rollins, RT, Sandy Wahl, RT, Cristy Batten, LSW, Laura Romero, LSW (University of Nebraska Medical Center); Whitney Gore, APN, Thomas Keens, MD, Kimberly Morse, LSW, Rocio Munter, Danieli Salinas, MD, Sylvia Sanchez (Children's Hospital of Los Angeles); Virginia Anderson, RD, Jami Dunn, RN, Stephanie Gamble, RT, Hector Gutierrez, MD, Kelli Lachowicz, LSW, Isabel Lowell, MD, Cathy Mims, RN, LaShonna Stodghill, RT, Gabriela Oates, PhD, Amanda Phillips, PT, Linda Russo, Staci Self, LSW (Children's of Alabama); Adrienne Savant, MD, Clement Ren, MD, MBA, George M. Solomon, MD, Julie Desch, MD, David Hansen, Ilene Hollin, PhD, Emily Kramer‐Golinkoff, Pamela Mertz, Erin Moore Publisher Copyright: {\textcopyright} 2022 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of University of Michigan.",
year = "2022",
doi = "10.1002/lrh2.10354",
language = "English (US)",
journal = "Learning Health Systems",
issn = "2379-6146",
publisher = "John Wiley and Sons Inc.",
}