Planning Ahead for Hemophilia

Summit for stakeholders produced recommendations for care
Author: Beth Marshall

The National Hemophilia Foundation (NHF) conducted a daylong summit of hemophilia stakeholders on May 24, 2012, in Washington, DC, to develop a recommended plan for hemophilia care.

The meeting focused on responding to the changing healthcare landscape. Representatives from patient organization groups, including NHF chapters and the Hemophilia Federation of America; consumers; physicians and researchers; nurses; social workers; public and private payers; and representatives from specialty pharmacies, pharmaceutical companies and hemophilia treatment centers (HTCs) gathered to create a road map for areas that NHF should support and provide leadership. The meeting was facilitated by Lewin Group, a healthcare and human services consulting firm, which then developed a five-year strategic plan based on the outcomes of the meeting.

The highlights of the strategic plan include: strengthening the evidence-based data for hemophilia care; generating evidence-based clinical practice guidelines; promoting adequate reimbursement for comprehensive care; and strengthening the national workforce for hemophilia care both at HTCs and local chapters.

NHF plans to incorporate the recommendations into its own five-year strategic plan.

The meeting was funded through the NHF Research Catalyst Fund, supported by Novo Nordisk.