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National Hemophilia National Hemophilia Program: Overview and Program: Overview and UpdateUpdate
Kathryn McLaughlin, MPHDHHS, HRSA, & MCHBPublic Health Analyst and Project Officer
Genetic Services Branch, Division of Services for Children with Special Health Care Needs, Maternal and Child Health Bureau, HRSA
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 independence3
Division of Children with Special Health Needs
6 Core Outcome Measures
New Program StructureNew 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)
Structure Structure [continued][continued]
Eight Regional networks – Grants NHPCC – Cooperative AgreementDefined 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
areaWhy?
◦More equitable distribution of funds/aligning with patient numbers and centers.
Regional Structure (continued)
• New England
• MidAtlantic
• Southeast
• Great Lakes
• Northern States
• Great Plains
• Mountain States
• Western States
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.
Goals of Network [RHN]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.
Activities for RHNActivities 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.
Activities for NHPCCActivities for NHPCC1. Coordination and evaluation of
activities carried out by the RHNs2. Information sharing among the RHNs 3. Projects of national significance4. Serve as the bridge between the RHNs
and HRSA, and other organizations5. Developing national priorities6. Assisting in the development and
implementation of care practice models and a standard of care
7. Technical assistance
HRSA Strategic PlanHRSA Strategic Plan
MissionTo improve health and achieve health equity through access to quality services, a skilled health workforce and innovative programs.
MCHBMCHB Associate Associate AdministratorAdministrator
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?”
Evolving emphasisEvolving 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
Take Home PointsTake 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
Why Performance Why Performance Measurement?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
Performance Performance MeasurementMeasurementData 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.
Measurement Requirements for both Measurement Requirements for both the RHN and the NHPCCthe 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
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.
Healthy People 2020Healthy People 2020Bleeding 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.
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)
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)
