1. National Hemophilia Program: Overview and Update Kathryn McLaughlin, MPH DHHS, HRSA, & MCHB Public Health Analyst and Project Officer Genetic Services Branch, Division of Services for Children with Special Health Care Needs, Maternal and Child Health Bureau, HRSA

3. Family/Professional Partnerships ◦ Families are partners in decision making at all levels Medical Home ◦ Coordinated, ongoing, comprehensive care within a medical home Insurance ◦ Adequate private and/or public insurance to pay for the services needed Early and Continuous Screening ◦ Early and continuous screening for special health care needs Integrated Community- Based Services ◦ Services organized so families can use them easily and are satisfied with services received Transition to Adult Life ◦ Youth receive services to make transition to all aspects if adult life including health care, work and independence 3 Division of Children with Special Health Needs 6 Core Outcome Measures

4. New Program Structure We have structured the Comprehensive Hemophilia Diagnostic and Treatment Centers Program into two activities: Project 1 – National Hemophilia Program Regional Network (RHN) and Project 2 – National Hemophilia Program Coordinating Center (NHPCC)

5. Structure [continued] Eight Regional networks – Grants NHPCC – Cooperative Agreement Defined by a combination of ◦ Public Health Service Regions ◦ Similarity in numbers of patients ◦ Similarity in numbers of centers/340 B programs ◦ While maintaining a reasonable geographic area Why? ◦ More equitable distribution of funds/aligning with patient numbers and centers.

6. Regional Structure (continued) New England MidAtlantic Southeast Great Lakes Northern States Great Plains Mountain States Western States

7. Regional Structure [continued] New England Network: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont, New Jersey, New York, Puerto Rico, and the Virgin Islands. Mid-Atlantic Network : Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, and West Virginia. Southeast Network : Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, and Tennessee. Great Lakes Network : Indiana, Michigan, and Ohio. Northern States Network : Illinois, Minnesota, Wisconsin, North Dakota, and South Dakota. Great Plains Network : Arkansas, Louisiana, Oklahoma, and Texas Iowa, Kansas, Missouri, and Nebraska. Mountain States Network : Arizona, Colorado, Montana, New Mexico, Utah, Wyoming, Alaska, Idaho, Oregon, and Washington. Western States Network : California, Hawaii, Nevada, American Samoa, Commonwealth of the Northern Mariana Islands, Federated States of Micronesia, Guam, Marshall Islands, and Republic of Palau.

8. Goals of Network [RHN] To ensure that individuals with hemophilia and other bleeding disorders and their families have access to quality care and appropriate hematologic, genetic and other medical expertise and information in the context of a medical home that provides accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective care, with the following objectives: ◦ Strengthen communication and collaboration among public health, individuals, families, primary care providers, hematologic and genetic medicine and other subspecialty providers; and ◦ Quantitatively and qualitatively evaluate outcomes of projects undertaken to accomplish their goals.

9. Activities for RHN 1. Establish ongoing program evaluation and assessment; 2. Using a life course approach, refine service delivery. 3. Develop novel and culturally and linguistically relevant outreach methods to those outside of the HTC system and the underserved. 4. Increase collaboration between local hemophilia treatment centers and Genetics Regional Collaboratives and other funded HRSA programs.

10. Activities for NHPCC 1. Coordination and evaluation of activities carried out by the RHNs 2. Information sharing among the RHNs 3. Projects of national significance 4. Serve as the bridge between the RHNs and HRSA, and other organizations 5. Developing national priorities 6. Assisting in the development and implementation of care practice models and a standard of care 7. Technical assistance

11. HRSA Strategic Plan Mission To improve health and achieve health equity through access to quality services, a skilled health workforce and innovative programs.

12. MCHB Associate Administrator While at UCLA, Dr. Lu was a lead investigator for the National Children’s Study and led a project to monitor and improve the quality and safety of maternity care in California. The recurring discussion with staff ◦ “can we show impact of our investments?” ◦ “is this the best use of our funds?”

13. Evolving emphasis HRSA ◦ Evaluation ◦ Quality Improvement ◦ Collaboration MCHB ◦ What are we currently doing, what can we do better and how to we move forward? DCSHN ◦ How to fit our core outcomes into the lifespan model and ensure all people get the services they need

14. Take Home Points Agency emphasis, MCHB emphasis and Division emphasis ◦ How are we improving care, how can we do it better and what is the impact of our efforts? All new projects have quality and impact measures as part of the guidance We will need to be able to demonstrate our value ◦ Data is important

15. Why Performance Measurement? “…no intervention, program or project, regardless how dear or favored, is beyond the scrutiny of being measured, monitored and documented for impact.” - Centers for Disease Control and Prevention, The Second National Conference on Blood Disorders in Public Health: 2012

16. Performance Measurement Data collection currently required by MCHB: ◦ Discretionary Grant Information System (DGIS) measures:  PM-7: The degree to which MCHB-supported programs ensure family participation in program and policy activities. The Centers for Disease Control and Prevention (CDC) collects data through the Universal Data Collection System, using the Annual Visit Report form. Grantees have developed the Hemophilia Data Set, which is a national patient registry of those who receive treatment within the Hemophilia Treatment Center (HTC) Network.

17. Measurement Requirements for both the RHN and the NHPCC DGIS measures: PM03: The percentage of MCHB-funded projects submitting and publishing findings in peer- reviewed journals. PM07: The degree to which MCHB-funded programs ensure family, youth, and consumer participation in program and policy activities. PM10: The degree to which MCHB-funded programs have incorporated cultural and linguistic competence elements into their policies, guidelines, contracts and training. PM24: The degree to which MCHB-funded initiatives contribute to infrastructure development through core public health assessment, policy development and assurance functions. PM26: The extent of training and technical assistance (TA) provided and the degrees to which grantees have mechanisms in place to ensure quality in their training and TA activities. PM27: The degree to which grantees have mechanisms in place to ensure quality in the design, development, and dissemination of new information resources that they produce each year. PM33: The degree to which MCHB-funded initiatives work to promote sustainability of their programs or initiatives beyond the life of MCHB funding. PM37: The degree to which grantees have worked to increase the percentage of youth who have received services necessary to transition to all aspects of adult life, including adult health care, work, and independence. PM40: Medical Home A: Facilitating Access (for RHNs only) PM41: Medical Home B: Infrastructure Building

18. Measurement Requirements for RHNs Only Nationally Recognized Performance Measures: either five of the following Healthy People 2020 evaluation measures or provide five measures that are nationally endorsed (and indicate by whom (i.e., NQF, CMS or HEDIS, etc.). AH–5.6: Decrease school absenteeism among adolescents due to illness or injury. BDBS–11: (Developmental) Increase the proportion of persons with bleeding disorders who receive recommended vaccinations. BDBS–12: Reduce the number of persons who develop venous thromboembolism (VTE). BDBS–13: (Developmental) Reduce the number of adults who develop venous thromboembolism (VTE) during hospitalization. ◦ BDBS–13.1 (Developmental) VTE among adult medical inpatients. ◦ BDBS–13.2 (Developmental) VTE among adult surgical patients. BDBS–15: Increase the proportion of women with von Willebrand disease (vWD) who are timely and accurately diagnosed. BDBS–16: Reduce the proportion of persons with hemophilia who develop reduced joint mobility due to bleeding into joints. DH–5: Increase the proportion of youth with special health care needs whose health care provider has discussed transition planning from pediatric to adult health care. DH–8: (Developmental) Reduce the proportion of people with disabilities [or special health needs] who report physical or program barriers to local health and wellness programs. HC/HIT–2: Increase the proportion of persons who report that their health care providers have satisfactory communication skills. IVP–2: Reduce fatal and nonfatal traumatic brain injuries. MICH–30: Increase the proportion of children, including those with special health care needs, who have access to a medical home.

19. Healthy People 2020 Bleeding and Clotting BDBS–11: (Developmental) Increase the proportion of persons with bleeding disorders who receive recommended vaccinations. BDBS–12: Reduce the number of persons who develop venous thromboembolism (VTE). BDBS–13: (Developmental) Reduce the number of adults who develop venous thromboembolism (VTE) during hospitalization. ◦ BDBS–13.1 (Developmental) VTE among adult medical inpatients. ◦ BDBS–13.2 (Developmental) VTE among adult surgical patients. BDBS–15: Increase the proportion of women with von Willebrand disease (vWD) who are timely and accurately diagnosed. BDBS–16: Reduce the proportion of persons with hemophilia who develop reduced joint mobility due to bleeding into joints.

20. Health Communication/Health Information Technology (HC/HIT) HC/HIT–2: Increase the proportion of persons who report that their health care providers have satisfactory communication skills. HC/HIT –3: (Developmental) Improve the health literacy of the population. Disability and Health (DH) DH–2: Increase the number of Tribes, States, and the District of Columbia that have public health surveillance and health promotion programs for people with disabilities and caregivers. DH–2.2 Increase the number of State and the District of Columbia health departments that conduct health surveillance for caregivers of people with disabilities. DH–5: Increase the proportion of youth with special health care needs whose health care provider has discussed transition planning from pediatric to adult health care. DH–8: (Developmental) Reduce the proportion of people with disabilities who report physical or program barriers to local health and wellness programs. DH–10: (Developmental) Reduce the proportion of people with disabilities who report barriers to obtaining the assistive devices, service animals, technology services, and accessible technologies that they need. Healthy People 2020 (continued)

21. Adolescent Health (AH) AH-1: Increase the proportion of adolescents who have had a wellness checkup in the past 12 months Increase the proportion of adolescents who have had a wellness checkup in the past 12 months Access to Health Services (AHS) AHS-2: (Developmental) Increase the proportion of insured persons with coverage for clinical preventive services AHS-8: (Developmental) Increase the proportion of persons who have access to rapidly responding pre-hospital emergency medical services Maternal, Infant, and Child Health (MICH) MICH-30: Increase the proportion of children with special health care needs who have access to a medical home. MICH-31: Increase the proportion of children with special health care needs who receive their care in family-centered, comprehensive, coordinated systems Healthy People 2020 (continued)

22. Questions? Kathryn McLaughlin, MPH Phone: 301-443-6829 Email: kmclaughlin@hrsa.gov