Developing a Comparative
Effectiveness Research Agenda for
Children with Chronic Conditions
Academy Health Conference
June 27, 2010
Bonnie Strickland, Ph.D.
Director, Division of Services for Children with Special Health Care
Needs
H lth R
Health
Resources and
dS
Services
i
Ad
Administration
i i t ti
Department of Health and Human Services
Objectives
• National Agenda for CSHCN,
• Comparative Effectiveness Research from
a health care delivery perspective,
• Quality
Q lit Improvement
I
t and
d CER.
CER
HRSA: America’s Health Care
Safety Net
• HRSA is the primary Federal agency for
improving access to health care services for
people who are uninsured, isolated or
medically vulnerable.
• Improving health and saving lives by making
sure the right services are available in the
right places at the right time.
MCHB
The MCH p
population
p
includes all America’s
women, infants, children, adolescents and their
g women of reproductive
p
age,
g ,
families,, including
fathers, and children with special health care
(
)
needs (CSHCN).
Title V Legislation for CSHCN
• T
To provide
id and
d promote
t ffamily-centered,
il
t d
community-based, coordinated care…for
children with special health care
needs…and facilitate… community-based
y
systems of services...
CSHCN: Defined Broadly
• Children and youth with special health
care needs (CSHCN) are those who have
‘a chronic physical, developmental,
behavioral, or emotional condition and
who also require
q
health and related
services of a type or amount beyond that
required by children generally
generally.’
Systems of Services:
Operationalized
Facilitate the development of community-based
systems of services through:
– Partnerships with families and consumers,
– Access to care through the medical home,
– Adequate financing,
– Earlyy and continuous screening,
g,
– Organization of services for easy use,
– Transition to adult health care,
care work
work, and
independence.
National Survey of Children with
Special Health Care Needs
• Produce national and state level estimates of the
prevalence of special health care needs and
their impact on children and families
• Explore the extent to which children with special
health care needs (CSHCN) have medical
homes, adequate health insurance, and access
to needed services. Other topics include care
coordination
di ti and
d satisfaction
ti f ti with
ith care.
• Assess how well the system works from the
perspective of families
National Survey of Children with
Special Health Care Needs
• Family Partnership and Satisfaction
Status: 57%
• Access to Medical Home
Status: 47%
• Access to Affordable Insurance
Status: 62%
• Early and Continuous Screening
Status: 64%
• Easy Access to Community Based Services
Status: 89%
• Services to Transition to Adulthood
Status: 41%
(NS-CSHCN, 2005-06)
Pediatric CER: A Recognized
Priority
focused attention is needed on priority populations,
including …. individuals with disabilities,
children, persons with multiple chronic
conditions, …not only because of their underrepresentation in current research but also
because of the increased disease burden and
health disparities faced by these sub-groups
(The Federal Coordinating Council for Comparative Effectiveness Research,
2009)
Pediatric CER: A Recognized
Priority
• Priorities for Comparative Effectiveness
Research includes:
– preventive care, pediatric care, and children’s health,
– Comparison of current
current, more traditional models of
chronic care delivery with team-based, patientcentered models that include patient education and
self-care.
(The Federal Coordinating Council for Comparative Effectiveness Research,
2009))
Comparative Effectiveness
Research : The Service System
• Important to study the effectiveness of the
context of care as well as treatment
effectiveness,
• What is efficacious in randomized clinical
trials is not always effective in the real
world of day-to-day practice,
Comparative Effectiveness
Research : The Service System
• CER should have broad applicability
pp
y as
well as CER’s specific to subsets of
children,
children
• Important to carefully consider how CER is
communicated to doctors, patients, and
other stakeholders.
Care Model for Child Health in a Medical Home
Health System
Community
y
Resources
and
P li i
Policies
Health Care Organization (Medical Home)
Care
Partnership
Support
Supportive,
Integrated
Community
Family centered
Delivery
y
System
Design
Decision
Support
Informed,
Activated
Patient/Family
Timely &
efficient
Evidence based &
Evidence-based
safe
Clinical
I f
Information
ti
Systems
Prepared,
Prepared,
Proactive
Proactive
Practice
PracticeTeam
Team
Coordinated and Equitable
Functional and Clinical Outcomes
CER: Family Professional
Partnership
• Shared Decision-Making:
– Compare the impact of shared decisiondecision
making to usual care on child outcomes,
– Identify effective strategies to measure the
effect of shared decision-making on the
quality of decisions and the implications for
the quality and costs of care.
CER: Medical Home
• Comparison of the impact of clinical
decision support
pp for care coordination to
usual care for children with special needs,
• Comparison of medical home with usual
care for children with special needs, with
f
focus
on disparities
di
i i as wellll as comparison
i
of strategies
g
for reducing
g health care–
associated infections (IOM).
(Institute of Medicine, 2009)
Crossing the Quality Chasm:
CER IImplications
li ti
ffor CSHCN
• The “microsystem” is where the quality
experienced
i
db
by th
the child
hild and
d ffamily
il iis
ultimately made or lost.
• Pediatric health care organizations/
practices will require evidence-based
design options to effectively implement
evidence-based
id
b
d iinterventions
t
ti
ffor CSHCN
CSHCN.
(Donald Berwick, 2002)
Crossing the Quality Chasm:
CER IImplications
li ti
ffor CSHCN
• The national health care system/
environment must identify efficient
efficient,
evidence-based mechanisms for
appropriate financing, professional training
and capacity-building
p
y
g in order to
implement knowledge gained from CER
intervention studies for CSHCN.
CSHCN
(Donald Berwick, 2002)
Crossing the Quality Chasm:
CER Implications for CSHCN
• The experiences of children and their
families should be the fundamental source
of the definition of quality.
q
y
• “True north lies in the experience of
patients, their loved ones
patients
ones, and the
communities in which they live”.
(Donald Berwick, 2002)
Contact Information
Bonnie Strickland,
Strickland Ph.D.
Ph D
Director, Division of Services for Children
with Special Health Care Needs
301-443-9331
bstrickland@hrsa.gov