Developing a systematic approach to make the best care even better.
The NHPCC is working with our partners to align strategic efforts around projects that address our national priorities as identified in the national needs assessments and Maternal and Child Health Bureau (MCHB) core measures. The projects strive to increase access to care for underserved members of the blood disorders population and to improve the care delivered once a person is engaged with the HTC system of care.
The NHPCC collaborates with the regional hemophilia networks (RHNs), the Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC), and the National Heart, Lung and Blood Institute (NHLBI) to report on blood disorder-specific measures as part of the Healthy People national agenda for improving health in the United States. Healthy People provides science-based, 10-year objectives for improving the health of all Americans.
Healthy People 2020
Each decade since 1990 when data was first reported, Healthy People has identified various health quality indicators to measure and improve. Blood disorders were included for the first time as part of the Healthy People 2020 (HP2020) quality indicators, a significant step in recognizing blood disorders as a national health priority. HP2020 data for the first four national blood disorder measures below was gathered at 146 HTCs across the country through Community Counts: CDC Public Health Surveillance Project for Bleeding Disorders:
- BDBS-15 Von Willebrand Disease
- BDBS-16 Joint Disease
- BSBS-8 High School Completion
- AH-5.6 Absenteeism
- DH-5 Transition Planning (data source was the Patient Experience of Care Survey)
Healthy People 2030
Planning for Healthy People 2030 (HP2030) is currently underway. The most significant HP2030 measure for the blood disorders community is BDBS-16: Joint Disease, which aims to reduce the proportion of persons with severe hemophilia who have more than four joint bleeds per year. The NHPCC reports data for this measure to HRSA, and the data will be gathered through Community Counts.
Other national priorities that the NHPCC has addressed are listed below, along with various technical assistance resources.
340B Drug Pricing Program
- 340B Drug Pricing Program brochure
- 340B video [Video Short (5.40 minutes) Video (9.49 minutes)]
- Impact of the 340B Drug Pricing Program on Services and Supports for Persons Served by Hemophilia Treatment Centers in the United States
- Genetic Counseling for the Inherited Bleeding Disorders Community
- Before and After Genetic Testing
- Family Planning for Hemophilia Carriers
- Orientation for HTC Staff Guidelines