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Strategic Summit Report Now Available

July 1, 2013

In May 2012, NHF held a strategic summit on the future of bleeding disorders care in the United States.  The meeting brought together individuals representing all components of the bleeding disorders community--consumers, providers, insurers, treatment manufacturers, researchers and our federal program partners.  Participants discussed the evolving healthcare environment and its impact on care, and began to lay out key elements for a strategic plan during the next five years.

The summit was planned by NHF in collaboration with the Lewin Group, a consulting firm that facilitated the meeting.  Discussion was organized around several topics related to the financing, organization and delivery of healthcare services and evidence, guidelines and standards of care for treatment.  The discussion led to a series of recommendations, organized around these five key areas:

  • Evidence: Strengthen Evidence Base for Hemophilia Care
  • Guidelines: Generate and Maintain Evidence-Based Clinical Practice Guidelines
  • Comprehensive Care: Promote Comprehensive Hemophilia Care
  • Financing: Promote Adequate Financing of Comprehensive Hemophilia Care
  • Workforce: Strengthen the National Workforce for Hemophilia Care

The summit report drafted by the Lewin Group, including the recommendations, discussion summary and list of participants, is available here.  The Lewin Group is an Ingenix company, which is a wholly owned subsidiary of UnitedHealth Group.  It operates with editorial independence, and provides clients with expert and impartial healthcare and human services policy research and consulting services. 

NHF has started prioritizing the next steps to take in each area and more details about these initiatives will be shared with the community as they are available.  We will continue to work with all community stakeholders to ensure that individuals with bleeding disorders continue to have access to high-quality healthcare.