Child and Adolescent Health Measurement Initiative
Johns Hopkins Bloomberg School of Public Health
September 16, 2015
Christina D. Bethell, PhD, MBA, MPH
“It is easier to build strong children than to repair broken men.”
Frederick Douglass
(1817–1895)
Our Goals
1.
Promote early and lifelong health using family-centered data
and tools
2.
Put children, youth and families at the center of
measurement and improvement efforts to improve their wellbeing
Quick Snapshot of the CAHMI
• Established in 1997, the CAHMI promotes early and lifelong health of children
using family-centered data and tools.
cer
Dis
lop
Transfomational
Partnerships
e ve
Promote Child
Health and
System
Excellence
D
nd
na
Inn
ova
te
and
Act
Transformative Goals
for Child Health
Actionable Data
Inspire and Inform
4
How do we achieve our goals?
Top-Down; Bottom-Up; Inside-Out Strategies
• The CAHMI keeps the focus on family-centered health care.
• Frameworks, education, advocacy, assistance
• The CAHMI builds the supply for family-centered measurement
improvement strategies.
• Develops, translates, adapts, fills gaps
• The CAHMI builds the demand for family-centered measurement
and improvement.
• Engage and empower families, facilitate family-system
partnerships; demonstrates value and value of family engagement;
activate the “well-being” instinct/commitment among people,
communities, organizations
What do we do?
• Educate and Advocate
• Develop and Demonstrate
• Translate and Disseminate
Our JHSPH Team
• Director –Christina Bethell
• Research Associates –
• Narangeral Gombojav
• Michele Solloway
• Research Program Managers –
• Caitlin Murphy
• Scott Stumbo
• Research Program Coordinators• Grace Sherman
• Rosa Avila
Look
• Research Assistants
• Kate Powers
• Andrea Harris
for our signs on our
doors on the 4th floor!
• Administrative Coordinator – AJ Fenske
• Some contractors;
• Many JHU, national, state and local partners!!!
Current Focus
• Measurement Development and Testing: Health, well-being and
program and system systems accountability and improvement
measurement
• Data-In-Action: National Maternal and Child Health Data
Resource Center
• Person-Driven Improvement: IT-Based Family Driven Health
Measurement and Improvement
• Translating social determinants of health, new brain sciences
and human development sciences in practice:
• Childhood Trauma and Resilience: Resilience-Based Measurement and
Strategies to Address Adversity
• Mindfulness and Mind-Body Healing Methods: individual, relational,
organizational applications
Student opportunities
• For undergrad, graduate, and post-grad
students:
• Internships
• Student workers
And, of course…
• Use our data for your own research
“Swamping” the System:
Same Metrics Applied at All Levels of Change
National, State, geographic region, county, city
Health plan, type of health care provider
(Pediatrician, Family Medicine)
Medical group, office, individual
health care provider
Patient:
Parent & Child
Example: Systems of Services for CSHCN
….and new Title V Block Grant Performance Measures
Community-based services are organized for ease of use.
influences
Families of
CSHCN have
adequate
insurance to pay
for the services
they need.
CSHCN receive coordinated, ongoing and
comprehensive care within a medical
home.
helps
enable
Children are
screened early and
continuously for
special health care
needs.
Youth with special
health care needs
receive services
necessary for a
successful transition
to adult life.
Families of CSHCN are partners in decision making at all levels.
influences
influences
MATERNAL AND CHILD HEALTH
MEASUREMENT RESEARCH NETWORK
- OPTIMIZING MEASUREMENTS TO IMPROVE MCH SYSTEMS -
This cooperative agreement, UA6MC26253, is funded through the U.S. Department of Health and Human Services,
Health Resources and Services Administration, Maternal and Child Health Research Program.
Maternal and Child Health
Measurement Research Network
ROLE OF MEASUREMENT IN TRANSFORMING MCH
THEORY OF CHANGE
INPUTS
ACTIVITIE
OUTPUTS OUTCOMES
CULTURE
INCENTIVES
RESOURCES
S
• Life Course Health
Development (LCHD)
framework
• New, emerging and
existing measures
• New ways of
collecting, mapping,
analyzing and
representing data
• To improve health
system performance
• To demonstrate
value of services
• To transform models
of care
• To train the next
generation of MCH
practitioners with
improved tool kits
• Post-ACA landscape
• Cooperation
• Shared value
• Alignment of
similar efforts
• Learning
innovations and
improvement
MCH - MEASUREMENT
RESEARCH NETWORK
Improved MCH
Systems
ORIENTATION
TOWARD
“MCH 3.0”
Measurement
Innovations
Creating &
Sharing
Innovations
Establishin
g&
Promoting
Measureme
nt
Learning
Collaborati
ves
TRANSLATIONAL
INNOVATIONS
ANALYTIC
INNOVATIONS
Developing
an MCH
Measurem
ent Portal/
Compendi
um
MEASURE
POPULATION
HEALTH
INTEGRATION OF
SERVICES
VERTICALLY
HORIZONTALLY
LONGITUDINALLY
LEARNING HEALTH
SYSTEMS
INNOVATIONS
CONCEPTUAL
INNOVATIONS
SHARED VALUES/
COMMON CAUSE
ACROSS SECTORS
ENHANCED
FOCUS ON
DATA  INFORMATION 
CURRENCY/VALUE
SOCIAL JUSTICE
& DECREASING
HEALTH AND
NON-HEALTH
EQUITY
www.childhealthdata.org
1) Provide centralized, user-friendly, interactive access to
standardized national, regional and state-level findings
from national surveys on child and adolescent health and
well-being.
2) Build shared knowledge, capacity, and inspiration for
using data to stimulate and inform system change locally
and nationally—especially among state health agency
leaders and staff, family advocates and policy leaders.
Persistent gaps in health care quality and
system capacity for children
Proportion of children with special needs meeting federal Systems
of Care Quality Indicators, Nationwide (2009/10 NS-CSHCN)
CSHCN 12-17 Years Old
60%
50%
38.4%
40%
30%
26.5%
21.4%
20%
13.6%
CSHCN 0-11 Years Old
10%
60%
48.5%
50%
0%
-10%
40%
31.4%
30%
20.1%
20%
10%
0%
0-2 Achieved
3-4 Achieved
All 5 Achieved
0-2
Achieved
3-4
Achieved
5 Achieved
All 6
Achieved
Data Sets Available on the DRC Website
• National Survey of Children’s Health (NSCH)
• National Survey of Children with Special Health
Care Needs (NS-CSHCN)
• National Health Interview Survey:
Complementary Alternative Medicine Supplement
(NHIS-CAM)
• Autism Pathways Survey (NS-CSHCN Follow
Back)
• National and State level NHIS data;
• County/City Level NSCH Data
Phase 1 - Integrating Pathways Survey into the DRC:
DRC Interactive Data Query Step 3
AutismSpeaks Collabortion
PUTTING DATA INTO ACTION
THE DATA RESOURCE CENTER FOR CHILD & ADOLESCENT HEALTH
WWW.CHILDHEALTHDATA.ORG
The Data Resource Center is
supported by the federal
Maternal and Child Health Bureau
Motivation: People/patients/families are the most underused resource for health and
systems improvement
23
24
Bottom-Up: The need to engage and empower families
to improve health and access and quality of services
Health and Health Related
Community Based Service
Providers
5
THE WELL VISIT PLANNER
A TOOL FOR FAMILY
ENGAGEMENT IN HEAD START &
EARLY HEAD START CENTERS
The WVP Website: Three Easy Steps
Families of young children visit the Well-Visit Planner website and
complete the following steps before their child’s age-specific well-visit:
Step 1
Answer a Questionnaire
about your child and family.
The questionnaire has about 40
questions and takes about
10 minutes to complete.
Step 2
Pick Your Priorities
for what you want to talk or
get information about at your
child’s well-visit.
Based on Bright Futures Guidelines
Step 3
27
Get Your Visit Guide
that you and your child’s
health care provider will use
to tailor the visit to your child
and family needs.
28
CHILDHOOD TRAUMA AND POSITIVE HEALTH
TRANSLATING SOCIAL DETERMINANTS OF HEALTH, HUMAN DEVELOPMENT,
NEURODEVELOPMENTAL AND EPIGENETIC SCIENCES
30
31
ACEs Impact Multiple Outcomes
Smoking
Alcoholism
Promiscuity
Relationship
Problems
High perceived
stress
Married to an
Alcoholic
Difficulty in job
performance
Poor SelfRated Health
Hallucinations
High Perceived
Depression
Obesity
General Health and
Sleep
Risk of HIV
Social Functioning
Disturbances
Risk Factors for
Mental
Common Diseases
Health
Memory
Disturbances
Poor Perceived
ACEs
Illicit Drugs
Anxiety
Health
IV Drugs
Panic Reactions
Prevalent
Sexual
Multiple Somatic
Poor Anger
Health
Diseases
Symptoms
Control
Cancer Liver Disease
Teen Paternity Fetal Death
Skeletal
Chronic Lung
Teen
Unintended
Fractures
Disease
Pregnancy
Pregnancy
Sexually
Early Age of
Ischemic Heart Disease
Sexual Dissatisfaction
Transmitted
First
Diseases
Intercourse
Four Pronged Project Scope
Agenda
Build
Shared
Knowledge
• Build a coordinated child health
services and policy research
and action agenda
• Publish a set of applied
research papers to assess
current knowledge, practice and
translational research priorities
Four Pronged Project Scope
Capacity and
Resources
Participation and
Collective Action
• Assemble and develop resources to embed
awareness and support the development of
capacity, advocacy and innovation at three levels:
• – The clinician and family level
• – The healthcare organization level, including
hospitals, clinics, and health plans
• – The health policy level, including system
financing, organization, capacity and research
support
• Promote the community-wide partnerships essential to
promote health and address ACEs by strengthening the
presence of children’s health services research,
policy and practice in these larger child well-being and
ACEs collective impact efforts
1. American Academy of Pediatrics (2014) Addressing Adverse Childhood Experiences and Other Types of Trauma in the
Primary Care Setting. Find: www.aap.org/en-us/Documents/ttb_addressing_aces.pdf.
2. Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience.
(2014)
Bethell, C, Newacheck, P, Hawes, E, Halfon, N. Health Affairs Dec; 33(12);210-2016
3. Short project meeting video: http://www.acesconnection.com/clip/we-are-the-medicine-5-min?reply=410425417487175152
4. Robert Wood Johnson Foundation: http://www.rwjf.org/en/about-rwjf/newsroom/features-and-articles/ACEs.html
37
We Are the Medicine
Healing is Upon Us!
(and within and between us!)
38
An Audacious or Timely Idea?
Mind-Body Neuroscience and Population Health
We Are the Medicine: A BrainSmart
Approach To MCH and Population Health
Emphasizes
the cross-cutting relevance of brain health to
population health & health care costs and quality
Legitimizes
the known impact of embedded and chronic stress on
brain development and healthy development (the
ecobiodevelopmental model of health)
Calls Out
the syndemic of adverse childhood experiences and
links to early & lifelong health and the promise of
positive health development and healing
Recognizes
Concludes
our linked lives (neurobiology of “we”), the primacy of
safe, stable, nurturing relationships to brain health and
the changing, contextual & emergent nature of wellbeing (life course model)
that health & healing accelerate with a cross-cutting
“no wrong door” capacity for individual, relational and
collective presence/mindfulness. This is foundational
in order to engage neuro-restorative benefits across a
range of healing methods. The need to focus on
“adults as agents” (Your Being, Their Well-Being)
SOCIETAL
DYSFUNCTION
SOCIETAL
STRESS
SOCIETAL
HEALTH
SOCIETY
SYSTEMS
ORGANIZATIONS
FAMILIES
INDIVIDUALS
SYSTEM
DYSFUNCTION
SYSTEM STRESS
SYSTEM
HEALTH
ORGANIZATIO
NAL HEALTH
ORGANIZATIONA
L STRESS
ORGANIZATIONAL
DYSFUNCTION
FAMILY
HEALTH
INDIVIDUAL
HEALTH
FAMILY STRESS
FAMILY
DYSFUNCTION
INDIVIDUAL
STRESS
Slide Source: Sandra Bloom
INDIVIDUAL
DYSFUNCTION
Collective Mindfulness & Quality and Safety of Health Care
Capacity to
update
situational
awareness
Deference to
Expertise
(engage
brilliance where
it exists; okay to
say “I don’t
know”
Commitment to
Resilience
(change; failure;
uncertainty
normed)
“collective
mindfulness…is the
dominant attitude or
cultural feature that all
high-reliability
organizations display.”
Mark Chassin
President, The Joint
Commission (2011)
Sensitivity to
Operations
(even in
standardized
processes)
Preoccupation
with failure (or
fascination with
learning)
Reluctance to
simplify
(what is
inherently
complex and
uncertain)
Reward System:
Free Our Brilliance
Brave Being
First Focus on Self
Restore Brain Health
Take on Trauma
BrainSmart
Policy &
Practice
Principles to
Improve
Population
Health
Habit of Hope:
Prioritize Possibility
Amplify Positive
Experiences
Alert System:
Take on Transparency
Affiliative system:
From Fixing to Connecting
Become “We Ninjas”
43
Making the “CAACE” for Mindfulness
“Without mindfulness, there is no therapy.
Mindfulness is a necessary state to be in to
live your life. All growth occurs because
you are in a state of mindfulness. Without
mindfulness, there is no growth.”
Bessel van der Kolk
Professor of Psychiatry, Boston University. Author :
Treating Traumatic Stress in Children and Adolescents

Cross-Cutting

Accessible

Adaptable

Connecting

Enabling
Contact Information

Christina Bethell E-mail: [email protected]
 Connect with CAHMI: [email protected]
Thank You!
MUCH MORE
Option 1: Take the DRC “360 Tour”
View an array of measures and
select any to explore interactively
OPTION 2: The DRC “Full Search”
Step 1: Click on “Browse by Survey & Topic”
Step 4: From here, you can
once again select subgroups,
look at your state or compare
your state to others.
ACEs and Toxic Stress: Impact Pathways
“You can go good places with your
mind if you can’t go good places with
your body. “
Stephen Porges, PhD
Professor Emeritus, University of Illinois at
Chicago. Director, Brain Body Center in the
Department of Psychiatry. Author: The Polyvagal
Theory