Assessing gaps in care and resources to support care.

Assessing gaps in care and resources to support care is the first step to making the best care even better. In 2013-2014, in collaboration with the regional hemophilia networks and with input from a broad group of stakeholders and consumers, the NHPCC conducted the first national patient needs assessment and an HTC staff technical needs assessment. Based on the findings, a minority patient needs assessment was done to better understand the needs of the Hispanic and African-American communities. In addition, a survey of genetic counselors explored the genetic practices outside the HTC network. To further its commitment to support the regions in the future, the NHPCC will continue to explore ways improve the system of care for our patients.

Using knowledge learned from the needs assessments, the NHPCC has identified national priorities for quality improvement and staff technical assistance at the regional and HTC level to improve delivery of services and increase access to care. These priorities include:

• Training a network of coaches who are working with HTCs across the country to implement a structured quality improvement process
• Building HTC capacity to effectively transition patients from pediatric to adult care
• Outreaching to underserved populations, including women and men with von Willebrand disease
• Assisting genetic counselors practicing outside of an HTC to refer patients to a specialty center within the network
• Establishing an electronic format for sharing information and ideas