We're making progress to improve access and quality of care.
Since its founding in 2012, the National Hemophilia Program Coordinating Center (NHPCC) has built upon the ATHN infrastructure and collaborations to create a more integrated and collaborative national system that strives to improve access and quality while decreasing the cost of care for individuals with hemophilia and related bleeding disorders.
Since 2012, the NHPCC has successfully:
- Built an inclusive organizational structure staffed with public health professionals and supplemented by consultants in program evaluation and quality improvement.
- Engaged over 275 stakeholders from the 8 regions, consumer organizations, government agencies, and professional associations.
- Created and maintained a steering committee to review progress in meeting NHPCC goals.
- Conducted the first-ever National Patient Needs Assessment to identify gaps in services to improve access to care.
- Conducted the first-ever HTC Technical Needs Assessment to identify training and resource needs of HTC staff.
- Supported projects of national significance through Health Resources and Services Administration (HRSA) funding to develop best practices.
- Assessed the needs and expectations of the regional leadership through monthly conference and two annual meetings.
- Engaged the minority community to gain a better understanding of the challenges of accessing culturally sensitive care.
- Increased knowledge of genetics, produced educational materials, and developed an outreach strategy to train genetic counselors about blood disorders.
- Conducted the first national survey of the 340B Drug Pricing Program to evaluate the benefits of the program in supporting HTCs.
- Developed an educational webinar for adolescent transition of care.
- Produced a 340B Drug Pricing Program video [Video Short (5.40 minutes) Video (9.49 minutes)], showing how it benefits patients enrolled in HTCs.
- Collaborated with HRSA, CDC, and NHLBI to collect and report on the first blood disorder-specific Healthy People 2020 measures.
- Identified national metrics collected through the ATHNdataset to assess regional and HTC level variation and to identify opportunities for quality improvement.
- Completed the first national quality improvement pilot program focused on adolescent transition of care, evaluated the pilot program, and revised QI program to meet the needs of the blood disorders network.
- Published two case studies on QI team efforts to improve the transition from pediatric to adult care: Western New York BloodCare and Mountain States Hemophilia Network.
- Disseminated a graphic report on Health People 2020 representing trends on four of the five required metrics, which utilized Community Counts data as a source.
- Supported HTCs with a virtual training program: Patient Engagement Through Motivational Interviewing (MI) in support of enhancing patient engagement, an HRSA focus area.