Supporting initiatives for quality improvement.

Over the past 30 years, the regional hemophilia networks worked to achieve better outcomes for all persons with bleeding disorders. They deployed interdisciplinary patient-centered teams to deliver care, expanded the range of services offered and continually strive to increase access to care for underserved populations, including women with von Willebrand disease, women at risk for carrier status, individuals with HIV and hepatitis co-morbidities, minorities, and those living in rural areas. The NHPCC is coordinating and supporting a national quality improvement (QI) effort to ensure that the science of quality improvement further improves care and outcomes for individuals with bleeding disorders.

Working with the regional hemophilia networks and HTCs, the NHPCC is coordinating and supporting a national quality improvement (QI) effort with the regions and HTCs to further improve care and outcomes for individuals with bleeding disorders. Our strategy brings together three aspects of quality improvement:

  • Quality Measures
    Measuring quality metrics at the national, regional, and HTC level, using a collection of quality indicators. Reporting two bleeding disorder Healthy People 2020 evaluation measures raises bleeding disorders to a US health priority. Other national quality indicators are used to assess variation between regions and to identify opportunities for quality improvement.
  • Evidence of Best Practices
    Identifying and using evidence-based practices and tools to support quality initiatives.
  • QI Process Management
    Increasing QI capacity by training staff and regional core centers to apply the science of quality improvement at the HTC level to address national priorities.

Quality Improvement Program Sites by Region
New England States
Yale New Haven Hemophilia Treatment Center
Hemophilia Center of Western New York

Mid-Atlantic States
Hemophilia Center of Western PA

Southeast States
Comprehensive Bleeding Disorders Center at Emory University and Children’s Healthcare of Atlanta

Great Lakes States
Nationwide Children’s Hospital Hemostasis and Thrombosis Center
Cincinnati Children’s Hospital Medical Center
Michigan State University Center for Bleeding Disorders and Clotting Disorders

Northern States
Hemophilia Outreach Center

Great Plains States
Gulf States Hemophilia and Thrombophilia Center
Kansas City Regional Hemophilia Center

Mountain States
University of Colorado Hemophilia and Thrombosis Center
The Hemophilia Center at Oregon Health Science University

Western States
Center for Comprehensive Care and Diagnosis of Inherited Blood Disorders (CIBD)
Rady Children’s Hospital San Diego
Hemophilia Treatment Center of Nevada
UCSF Benioff Children’s Hospital Oakland

Quality Improvement Program Coaches
Susan Adkins, BSN, RN
Lourdes Arvelo, LCSW
Marcia Bird, MSW
Angela Blue, MBA
Kate Colbath, MSW, MPH
Lynda Datillio, RN, BSN, CCRN
Karen Droze, MS
Sabrina Farina, LMSW
Kara Garner, RN, MSN, NP
Duane Herron, MPH
Steven Humes, MM, MPH
Judith Kadosh, RN
Edward Kuebler, LCSW
Heidi Lane, PT
Brittany Molter, MSN, AGPCNP
Debbie Nelson
Stephanie Roessler, NP
Amy Schadewald, LICSW
Bobby Duc Quang Tran, MD

To learn more about the NHPCC’s quality improvement efforts, review your center’s quality metrics or talk to the coaches and HTC quality improvement sites listed above.