title: Transparency in a Pediatric Quality Improvement Collaborative: A Passionate Journey by NPC-QIC Clinicians and Parents.
abstract: Transparency-sharing data or information about outcomes, processes, protocols, and practices-may be the most powerful driver of health care improvement. In this special article, the development and growth of transparency within the National Pediatric Cardiology Quality Improvement Collaborative is described. The National Pediatric Cardiology Quality Improvement Collaborative transparency journey is guided by equal numbers of clinicians and parents of children with congenital heart disease working together in a Transparency Work Group. Activities are organized around four interrelated levels of transparency (individual, organizational, collaborative, and system), each with a specified purpose and aim. A number of Transparency Work Group recommendations have been operationalized. Aggregate collaborative performance is now reported on the public-facing web site. Specific information that the Transparency Work Group recommends centers provide to parents has been developed and published. Almost half of National Pediatric Cardiology Quality Improvement Collaborative centers participated in a pilot of transparently sharing their outcomes achieved with one another. Individual centers have also begun successfully implementing recommended transparency activities. Despite progress, barriers to full transparency persist, including health care organization concerns about potential negative effects of disclosure on reputation and finances, and lack of reliable definitions, data, and reporting standards for fair comparisons of centers. The National Pediatric Cardiology Quality Improvement Collaborative's transparency efforts have been a journey that continues, not a single goal or destination. Balanced participation of clinicians and parents has been a critical element of the collaborative's success on this issue. Plans are in place to guide implementation of additional transparency recommendations across all four levels, including extension of the activities beyond the collaborative to support transparency efforts in national cardiology and cardiac surgery societies.
authors.affiliation: Sisters by Heart.
authors.forename: Stacey L
authors.initials: SL
authors.lastname: Lihn
authors.affiliation: Division of Cardiology, Children's Hospital & Medical Center, Omaha, Neb, USA.
authors.forename: John D
authors.initials: JD
authors.lastname: Kugler
authors.affiliation: Independent Consultant, Boston, Mass, USA.
authors.forename: Laura E
authors.initials: LE
authors.lastname: Peterson
authors.affiliation: James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
authors.forename: Carole M
authors.initials: CM
authors.lastname: Lannon
authors.affiliation: Sisters by Heart.
authors.forename: Diane
authors.initials: D
authors.lastname: Pickles
authors.affiliation: Department of Cardiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
authors.forename: Robert H
authors.initials: RH
authors.lastname: Beekman
mesh_terms: D002309:Cardiology / Q000592:standards*; D002648:Child; D019317:Evidence-Based Medicine / Q000592:standards*; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D033183:Interdisciplinary Communication; D010290:Parents / Q000523:psychology*; D010372:Pediatrics / Q000592:standards*; D058996:Quality Improvement / Q000592:standards*; D012042:Registries; D012955:Societies, Medical
keywords: Congenital Heart Disease; Hypoplastic Left Heart Syndrome; Public Reporting; Quality Improvement Collaborative; Transparency