title: Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease.
abstract: Care and outcomes for individuals living with sickle cell disease (SCD) vary across institutions and communities. The Hemoglobinopathy Learning Collaborative (HLC) seeks to improve outcomes across the life course through improvement science. Faculty identified five key drivers of improved outcomes: a strong community network; knowledgeable, proactive individuals, families and providers; reliable identification and follow-up; seamless co-management between primary and specialty care; and appropriate treatment for acute episodes. Using a modified Delphi process, we selected improvement measures aligned with the drivers. Data are collected via a Web-based system linked to a reporting portal. Participating teams include consumers, community organizations and primary and specialty care providers. This commentary reviews the context of SCD in the U.S.; describes the framework, measures, and technology infrastructure already created for the HLC; reports on the early experience of teams; highlights the initiative's challenges and opportunities; and reflects on its implications in the setting of health reform.
authors.affiliation: National Initiative for Children's Healthcare Quality, Children's Hospital at Montefiore/Albert Einstein College of Medicine, 3444 Kossuth Avenue, 1st Floor, Bronx, NY 10467, USA. soyeku@nichq.org
authors.forename: Suzette O
authors.initials: SO
authors.lastname: Oyeku
authors.forename: C Jason
authors.initials: CJ
authors.lastname: Wang
authors.forename: Richard
authors.initials: R
authors.lastname: Scoville
authors.forename: Rachel
authors.initials: R
authors.lastname: Vanderkruik
authors.forename: Emily
authors.initials: E
authors.lastname: Clermont
authors.forename: Marianne E
authors.initials: ME
authors.lastname: McPherson
authors.forename: William G
authors.initials: WG
authors.lastname: Adams
authors.forename: Charles J
authors.initials: CJ
authors.lastname: Homer
mesh_terms: D000755:Anemia, Sickle Cell / Q000628:therapy*; D003299:Cooperative Behavior; D054625:Healthcare Disparities; D006453:Hemoglobinopathies; D006801:Humans; D011785:Quality Assurance, Health Care / Q000458:organization & administration*; D058996:Quality Improvement; D016896:Treatment Outcome; D014481:United States