title: Hemophilia Management via Data Collection and Reporting: Initial Findings from the Comprehensive Care Sustainability Collaborative.
abstract: BACKGROUND
  Despite being a rare disorder, hemophilia represents a significant driver of health care resource utilization and requires expert hematologic and multidisciplinary services to achieve optimal outcomes. Since their inception nearly 40 years ago, hemophilia treatment centers (HTCs) have served as centers of excellence in providing the intensive care and ancillary services necessary for this unique patient base; however, the full capabilities of these centers may be underused in the current framework of managed care, largely because of a lack of communication and information shared between payers and HTC stakeholders.
  
  
  METHODS
  In an effort to enact tangible change toward improving the quality of care for bleeding disorders, the National Hemophilia Foundation developed an ongoing initiative among 18 leading clinicians and managed care decision makers called the Comprehensive Care Sustainability Collaborative (CCSC). The primary aim of the CCSC is to develop a framework for quality improvement pilot programs that can be replicated across the United States between payers and HTCs to facilitate cost-effective hemophilia management by integrating the HTC comprehensive care model.
  
  
  METHODS
  After CCSC committee members shared perspectives on care delivery, quality, and value, actionable data points were reviewed at length in order to develop meaningful metrics to facilitate information sharing between HTC and payer stakeholders. The following pragmatic measures will be reported by HTCs and payers via a series of pilot programs (reporting group is indicated in brackets): (a) patient classification by diagnosis (type, severity, and inhibitor status) [HTC]; (b) total cost of clotting factor [payer]; (c) prescribed factor dose/dispensed dose/patient weight (± range) [payer and HTC]; (d) emergency department visits/hospitalizations [payer and HTC]; (e) home infusion of clotting factor (%) [HTC]; (f) total cost per patient [payer]; and (g) patient contacts (e.g., clinic visits, follow-ups, telemedicine, and e-mail) [HTC].
  
  
  CONCLUSIONS
  Routine information sharing between HTCs and payer stakeholders is paramount to improving the quality and reducing the cost of hemophilia care, and the CCSC initiative provides a unique forum for such dialogue. Over the course of several consensus meetings, the CCSC has rigorously developed a set of quality improvement and cost management metrics. These metrics will be used in a first-of-its-kind series of pilot projects that are anticipated to forge innovative collaboration between payers and HTCs so as to improve outcomes in the management of bleeding disorders.
  
  
  BACKGROUND
  The preparation of this article was funded as part of the Comprehensive Care Sustainability Collaborative (CCSC) initiative, which is jointly sponsored by the National Hemophilia Foundation (NHF) and Impact Education, LLC, and supported via a charitable donation from Shire. Tarantino and Pindolia are members of the CCSC and were part of the NHF CCSC group that developed the metrics included in this article. Both authors received honorariums from the NHF for content development and expert review of the manuscript. Both authors contributed equally to the concept and design of this article and to analysis and manuscript preparation.
authors.affiliation: 1 University of Illinois College of Medicine, and The Bleeding and Clotting Disorders Institute, Peoria, Illinois.
authors.forename: Michael D
authors.initials: MD
authors.lastname: Tarantino
authors.affiliation: 2 Henry Ford Health System/Health Alliance Plan of Michigan, Detroit.
authors.forename: Vanita K
authors.initials: VK
authors.lastname: Pindolia
mesh_terms: D003625:Data Collection; D003695:Delivery of Health Care / Q000706:statistics & numerical data*; D019468:Disease Management; D006467:Hemophilia A / Q000628:therapy*; D006801:Humans; D008329:Managed Care Programs / Q000706:statistics & numerical data*; D010865:Pilot Projects; D012107:Research Design; D014481:United States