Projects

National Hemophilia Program Coordinating Center

Making the Best Care Even Better

Great progress has been made over the past 35 years in the treatment, diagnosis, and multi-disciplinary care of bleeding and clotting disorders. Healthcare teams at Hemophilia Treatment Centers (HTCs) across the U.S. have succeeded in extending life span and minimizing disabilities and complications from these disorders.

But can the community work together to make the best care even better?

The Maternal and Child Health Bureau (MCHB) in the Health Resources and Services Administration (HRSA) has named American Thrombosis and Hemostasis Network (ATHN) the first National Hemophilia Program Coordinating Center to find out.

About the Project

As the National Hemophilia Program Coordinating Center, the nonprofit ATHN will partner with over 130 ATHN Affiliate HTCs, regional leadership, NHF and other patient advocacy groups, government partners, 340B pharmacy programs, the genetics and newborn screening collaborative, payers, and thought leaders to guarantee a community-wide perspective and to explore key questions like:

  • How can we optimize health throughout the life span of a person with bleeding disorders?
  • Can we optimize health from generation to generation?
  • What can we do to deliver services that better address the needs of culturally diverse populations?
  • How can we track health outcomes of the bleeding disorders community over time?
  • What works? Are the services delivered by providers and used by patients and their families in line with the most current evidence about best practices?
  • The answers to these questions will help our community expand access to care for all patients with bleeding disorders and to improve the quality of care delivered. And the hope is that these answers will lead to a resounding YES – we can make the best care even better!
  • Talk with your HTC team to get more news about this project. This project is funded through the Health Resources and Services Administration grant #UC8MC24079-01-02.

Creation of A Coordinating Center

In June 2012, ATHN was named the first National Hemophilia Program Coordinating Center (NHPCC). Separately, HRSA funded eight regional collaborative networks. The NHPCC serves as a bridge between the regional networks, helping to create value on a national scale.

Mission

To facilitate, coordinate and evaluate the implementation of culturally sensitive activities carried out by the regional networks to optimize the health of individuals with bleeding and clotting disorders throughout their lifespan and across generations.

Goals

  • Facilitate the evolution of 8 HRSA regions into a cohesive and high performing network
  • Align strategic efforts by conducting a national needs assessment
  • Increase capacity to deliver a continuum of high quality, evidence-based and culturally sensitive services and supports
  • Establish a mechanism to fund pilot projects
  • Develop a systematic approach to support dissemination of evidence-based strategies

Regional Structure

Map

Project Organization

An organizational structure with committees and working groups has been implemented to assure adequate communication between the sponsor, the grantee, the regional leadership, HTCs, and community stakeholders.

Committees and Working Groups

The Steering Committee will provide leadership and project oversight on behalf of the NHPCC and its stakeholder groups.
Chair – Diane Aschman, Project Director, NHPCC
Co-Chair – Ann Forsberg, Associate Director, NHPCC

The Advisory Committee will advise on program initiatives and advocate for a NHPCC that facilitates, coordinates and evaluates culturally sensitive activities to optimize the health of individuals with bleeding and clotting disorders throughout their lifespan and across generations.
Chair - Amy Shapiro, M.D., Medical Director for the NHPCC

The Regional Leadership Group will establish a learning collaborative ensuring a forum to exchange ideas, data and expertise across regions in order to optimize the health of individuals with bleeding and clotting disorders throughout their lifespan and across generations.
Chair – Diane Nugent, M.D., Regional Director, Western States
Co-Chair – Kathryn Reese, MPH, Regional Coordinator, Northern States

The Needs Assessment Working Group, comprised of members nominated by the regions and consumer advocacy organizations, will recommend a process for developing and implementing a needs assessment across regional networks, consumers and other stakeholders.
Chair – Regina Butler, Regional Director, Mid-Atlantic States

The Technology Working Group will propose and oversee maintenance and growth of the secure web-based information infrastructure with standardized content that is expandable to other disorders, service providers and uses (including research and quality improvement) which will serve as the solid foundation for ATHN’s future.

The Community Relations and Communications Working Group will ensure that an accurate and compelling communication strategy cultivates collaborative relationships between ATHN and the bleeding and thrombosis community, including but not limited to ATHN Affiliates, government and industry partners, community based advocacy organizations, and the patients they serve.

The Genetics Working Group will stimulate collaboration, the sharing of resources and the development of programs that translate the science of genetics to the care of patients with bleeding and clotting disorders.

The 340B Working Group will ensure that HRSA and its stakeholders as well as patient/consumers recognize the importance of the 340B pharmacy program to an HTC’s ability to deliver comprehensive care services to the bleeding disorders community.

Demonstration Projects of National Significance

Learn more about NHPCC funded Demonstration Projects of National Significance. These projects will help the NHPCC develop quality improvement strategies to improve the delivery of care to persons in the federally funded hemophilia treatment center network. Download the project abstracts.

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