Partnering with Patients and Families
in the Medical Home
2011 CME Webinar Series
brought to you by the National Center for Medical Home Implementation
Patient- and Family-Centered Care
in the Medical Home
R.J. Gillespie, MD, MHPE, FAAP
Mercedes Rosa
Suzanne Bronheim, PhD
June 28, 2011
Disclosures
We have no relevant financial relationships with the
manufacturers(s) of any commercial products(s) and/or
provider of commercial services discussed in this CME
activity.
We do not intend to discuss an unapproved/investigative
use of a commercial product/device in my presentation.
Looking Back…
The first three webinars of this series:
History of medical home model
 Health care teams, family/professional partnerships,
Bright Futures, quality improvement
 Care management of chronic condition (asthma)
 Complex chronic needs

Webinar Objectives
By the end of this webinar, the participant will be able to:
State the importance of patient-and family-centeredness
in the delivery of preventive, acute, and chronic care
 Describe the impact of provider/parent partnerships on
positive child health outcomes, particularly for diverse
patient populations
 Explore strategies, tools, and resources available to assess
practices cultural and linguistic competency and its
impact on health disparities

What is Patient-Centered Care?
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Respect patients’ values, preferences and expressed
needs
Coordinate and integrate care across boundaries of the
system
Provide the information, communication, and education
that people need and want
Guarantee physical comfort, emotional support, and the
involvement of family and friends
Crossing the Quality Chasm: A New Health System for the 21st Century
Core Concepts of Patient-Centered Care
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Dignity and Respect
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Information Sharing
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Participation
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Collaboration
Cited in: Conway, J. et al. Partnering with Patients and Families to Design a Patient- and FamilyCentered Health Care System. www.ihi.org.
What is Family-Centered Care?
“Family-centered care assures the health and
well-being of children and their families through
a respectful family-professional partnership. It
honors the strengths, cultures, traditions and
expertise that everyone brings to this
relationship. Family-centered care is the
standard of practice which results in high
quality services.”
National Center for Family-Centered Care. Family-centered Care for Children with Special Health Care
Needs (1989). Bethesda, MD: Association for the Care of Children’s Health
Is Family-Centered Care Being Delivered?
 65.6% of parents of CSHCN reported that they
receive family-centered care (National Survey of
Children with Special Health Care Needs)
 In the National Survey of Children’s Health, 67.4% of
parents reported that they receive FCC
 What’s missing?
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Doctor did not “usually or always” spend enough time with
them
Children who needed interpretive services did not “usually or
always” get the services they needed
Eliciting Parent Concerns: A Snapshot
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Parents reporting important unmet needs by pediatric
clinicians: 94%
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Parents reporting they were not asked about learning,
development, or behavior concerns: 40%
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Pediatricians who agree they have sufficient time to address
family psychosocial problems: 16.3%
E. Schor. “Rethinking Well Child Care”, Pediatrics 114 (July 2004)
3 year old Well Child Care:
Anticipatory Guidance Subjects
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Car Seat
Stranger Awareness
Safe Touch
Helmets
Burns
Street Safety
Water Safety
Poison Control
Guns
Trampolines
Discipline
Consistency
Allow Decision Making TV
Dental Evaluation
Body Mass Index, Nutrition,
Sleep patterns, Behavior
Concerns, Development not
even included in AG section
Attending to parent concerns
What are ways to ensure parent concerns are elicited?
• Formal screening tools
• Pre-visit questionnaires
• Enhanced encounter
“Enhanced Encounter”
Enhanced “Encounter” (informed parents & providers / proactive participants)
Time frame B:
Time frame A:
During well child visit:
During week prior to well child visit:
Well child
visit
1)
Parents go to website for pre-visit
interactive session designed to give
individualized, tailored information
based on parents’ answers to:
-- Current concerns about child
-- Anticipatory guidance and
parental education needs
-- Brief assessment of child’s
development
-- Assessment of family risk factors
Parents can link to & print out
tailored educational materials that
respond to priorities and interests
identified during session
2)
After completing pre-visit
interactive session, parents print
out a customized copy of “What to
Discuss at your Child’s Visit:
a Personalized Guide” -- and
results of the child and family
assessment to review and bring to
well child visit.
3)
Pediatric clinicians use link in the EMR
to review interactive session results
for developmental screening, family risk
assessment, and priority educational
needs prior to well child visit.
4)
Parent and pediatric clinician
use results from pre-visit
interactive session to
prioritize and individualize
content of well child visit
Learning about (and using data about) families’
experience of care
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Patient surveys
 Delivery system versus clinical content?
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Parent advisory groups
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Parent consultants on QI projects
The Online PHDS
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Previous data we were getting only spoke to quality
of care and service.
 HEDIS Measures: did well child care occur on schedule?
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We wanted actionable data about parent
satisfaction with regard to the clinical content of
well child visits.
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The PHDS provided us areas of improvement at the
regional, office and (in some cases) provider level.
What we hoped to learn…
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Implemented for baseline quality measurement
•
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Questioned whether current Anticipatory Guidance
delivery is effective
•
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QI efforts focused on developmental screening
Is there a more effective way to deliver Anticipatory
Guidance subject matter?
Assess for other opportunities for future QI efforts
Now what?
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Confirmed our suspicions about developmental
screening, family risk assessment
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Patients given opportunity to engage in improving how
well child care is delivered
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Able to drive future QI projects
An Opportunity for Improvement: Peripartum
Depression
80%
Proportion of Children With Parents Experiencing Symptoms of Depression
% ASKED About Depression: Child's parent IS EXPERIENCING symptoms of DEPRESSION
60%
% ASKED About Depression: Child's Parent NOT experiencing symptoms of depression
38%
40%
33%
29%
28%
24%
24%
20%
16%
12%
11%
13%
12%
13%
0%
All Children
Child 3-9 Months Old
Child 10-18 Months Old Child 19-48 Months Old
Parent Advisory Group
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Parking
Telephone System
Accessibility
Wait times
Patient Portal
Communication
EMR
Evening/Weekend Care
Physician Hours
Marketing
Case Study
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Teen Somali mother, comes into the office for her first
visit with her newborn
FOB was abusive during pregnancy, deserted her in the
Portland area
Mother speaks no English, has no formal education, no
job, and only one friend in the area (sleeping on her
couch currently)
How do we engage a patient with cultural, language,
and literacy differences?
What is a Parent Partner?
The parent partner is an equal
member of the team within a
medical home.
Why Parent Partners?
The medical home team cannot
appropriately review the quality of their
service without the input from the
individual families they are working with.
Parent partners within the practice help
solicit that input.
Why is the Parent Partner Important?
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Ensures “family voice” is heard
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Provides input on systems change
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Shares personal experience and resources
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Helps to improve quality of service delivery
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Ensures that a family’s cultural background is
recognized, valued and respected.
Who are Parent Partners?
Parents who…
 Have a child with a disability and/or special
health care need
 Are emotionally ready to support others
 Have time to commit
 Enjoy working in a group or as part of a team
 Are able to share community/state resources
 Are able to share ideas, concerns and their personal
story in a meaningful way
 Are good listeners/communicators
Benefits to Families
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Provides a “voice” at the table for all the children &
families in the practice
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Improves Communication between parents and other
medical home staff
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Provides parents with resources & information on a
variety of topics
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Ensures better health outcomes for children & families
Benefits to the Practice
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Provides input on the daily challenges parents experience
Provides on-going support & meaningful family engagement
Provides information on community/state resources (ex. P2P,
FV, FSO’s, SCHS CMU’s/SPAN FRS’s, disability specific
organizations, other)
Improves communication between family and MH staff
Provides input into the development of tools
used to access the specific needs of children with special health
care needs and families
(ex. surveys, focus groups)
Provides on-going feedback from families
Role of the Parent Partner
Meet with medical home team on a regular basis
(determined by individual practice)
 Clearly define your roles and responsibilities (specific to
each practice) as a member of the medical home team
 Provide input on possible changes and decisions made
that impact children & families
 Assist families in completing the Medical Home Family
Index” to assess the “medical home-ness” of a practice
 Support families to provide other input to the practice re:
quality improvement
 Help families learn about, navigate, and connect with,
other health care, social, and community-based services
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Role of the Parent Partner
Provide materials to families that help support the
vision of the medical home team
 Participate in medical home training for parent
partners
 Attend three Learning Collaborative Sessions
with medical home team
 Participate in parent partner leadership
development (ex. monthly conference calls,
quarterly trainings)
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Support for the Parent Partner
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Provide mentor within your practice
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Provide overview of current policies and procedures
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Provide a staff directory with roles and responsibilities
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Provide on-going opportunities for learning
 Formal (lectures, workshops)
 Informal (discussion over coffee and/or lunch)
Support for the Parent Partner
Ensure that the parent partner is given opportunities to
provide input in a respectful and compassionate
environment
 Help connect the parent partner to the Family Voices
State Affiliate Organization and Family to Family Health
Information Center in your state if not already connected:
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F2F HICs provide assistance to families of CYSHCN and health
professionals in navigating health care systems; information,
education, training, support and referral to families of CYSHCN
and the professionals who work with them; and outreach to
engage, inform, and enhance the capacity of underserved
populations.
Parent Partner Selection Process
Look for a parent partner who values the input
of every team member and enjoys working
with a team where trust and respect are
reciprocal. You want someone who can work
at this level of partnership and also is an
expert in family issues.
This may take time.
Parent Partner Selection Process
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Identify 1-2 parents of children with special health care
needs
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Speak with the parents to ensure that they understand
their role as a parent partner on the medical home team
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Participate in a conference call about parent partners
with the MH Resource Team prior to your initial Medical
Home Orientation visit
Working with Diverse Parent Partners
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Partner with cultural brokers & family organizations with
expertise working with diverse families to help support
parent partners from underserved communities
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Be prepared to provide additional supports as needed.
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Demonstrate that you genuinely value the unique
perspectives & ideas of parent partners with varied
backgrounds, areas of strength, & experiences
Supports for Diverse Parent Partners
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Language access
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Stipends for child care, transportation as needed
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Support from more experienced parent partners from
their racial, language, socio-economic background
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Respectful solicitation of their views and thanks when
those views are shared
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Recognition of difficult circumstances and willingness to
allow parent partners to withdraw when needed and
return when willing
In a parent’s words…
“We need respect, we need to have our contributions
valued. We need to participate, not merely be
involved. It is, after all, the parent who knew the
child first and who knows the child best.”
A quote by parent Cory Moore when speaking with a professional
about her child. Taken from NICHCY News Digest, 3rd Edition, 2003
Cultural Competence
Requires that organizations have a clearly defined, congruent
set of values and principles, and demonstrate behaviors,
attitudes, policies, structures, and practices that enable them
to work effectively cross-culturally
Adapted from from Cross, Bazron, Dennis and Isaacs, 1989
Slide Source: National Center for Cultural Competence, © 2010
Five Elements of Cultural Competence
Organizational Level
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Value diversity
Conduct cultural self-assessment
Manage the dynamics of difference
Institutionalize cultural knowledge
Adapt to diversity
- Policies
- Structures
- Values
- Services
Adapted from from Cross, Bazron, Dennis and Isaacs, 1989
Slide Source: National Center for Cultural Competence, © 2010
Five Elements of Cultural Competence
Individual Level
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Acknowledge cultural differences
Understand your own culture
Engage in self-assessment
Acquire cultural knowledge & skills
View behavior within a cultural context
Adapted from from Cross, Bazron, Dennis and Isaacs, 1989
Slide Source: National Center for Cultural Competence, © 2010
Linguistic Competence
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Is the capacity of an organization and its personnel to
communicate effectively, and convey information in a
manner that is easily understood by diverse audiences
including persons of limited English proficiency, those
who are not literate or have low literacy skills, and
individuals with disabilities
Requires organizational and provider capacity to
respond effectively to the health literacy needs of
populations served
Insures policy, structures, practices, procedures and
dedicated resources to support this capacity
Goode & Jones, Revised 2004, National Center for Cultural Competence
Slide Source: National Center for Cultural Competence, © 2010
Benefits of Self-Assessment
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Gauge the degree to which organizations are effectively
addressing the needs & preferences of culturally and
linguistically diverse groups
Establish partnerships that will promote meaningful
involvement of patients and their families consumers,
key community stakeholders & constituency groups
Improve family/consumer access to and utilization of
services and enabling supports
Excerpt from A Guide to Planning and Implementing Cultural Competence Organizational Self-Assessment, 2002
Slide Source: National Center for Cultural Competence, © 2010
Benefits of Self-Assessment
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Increase patient/family satisfaction with services
received
Strategic planning for the systematic incorporation of
culturally and linguistically competent values, policies,
structures, practices, & procedures
Allocation of personnel and fiscal resources to enhance
the delivery of services and enabling supports
Determine individual and collective strengths and areas
for growth within organizations and systems
Excerpt from A Guide to Planning and Implementing Cultural Competence Organizational Self-Assessment,
2002
Slide Source: National Center for Cultural Competence, © 2010
NCCC’s Guiding Values & Principles for Self-Assessment
 Strengths-based
modes
 Safe & non-judgmental environment
 Meaningful involvement of consumers,
communities & key constituency groups
 Results enhance and build capacity
 Diverse dissemination strategies
Excerpt from A Guide to Planning and Implementing Cultural Competence Organizational Self-Assessment, 2002
Slide Source: National Center for Cultural Competence, © 2010
NCCC Resources for Self-Assessment
Slide Source: National Center for Cultural Competence, © 2010
NCCC Resources for Self-Assessment
Slide Source: National Center for Cultural Competence, © 2010
Cultural and Linguistic Health Practitioner Assessment
(CCHPA)
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A self-assessment, on-line learning tool
Subscales including: Values & Belief Systems, Cultural
Aspects of Epidemiology, Clinical Decision-Making, Life
Cycle Events, Cross-Cultural Communication and
Empowerment/Health Management
Provides feedback about your level (awareness,
knowledge, skills) on each subscale and provides
suggested resources/activities to enhance your
competence
Slide Source: National Center for Cultural Competence, © 2010
NCCC Resources for Self-assessment
Slide Source: National Center for Cultural Competence, © 2010
Cultural and Linguistic Competence Policy
Assessment (CLCPA)
The CLCPA is intended to support health care
organizations to:
 improve health care access and utilization
 enhance the quality of services within culturally diverse
and underserved communities
 promote cultural and linguistic competence as essential
approaches in the elimination of health disparities.
Slide Source: National Center for Cultural Competence, © 2010
Cultural and Linguistic Competence Policy
Assessment (CLCPA)
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The NCCC has also developed a companion Guide
for Using the Cultural and Linguistic
Competence Policy Assessment Instrument
that provides step-by-step instructions on how to
conduct an organizational self-assessment process.
Slide Source: National Center for Cultural Competence, © 2010
Self-assessment Checklists
This checklist is intended to heighten the awareness and sensitivity of personnel
to the importance of cultural diversity and cultural competence in human service
settings. It provides concrete examples of the kinds of values and practices that
foster such an environment. It addresses:
• Physical Environment, Materials and Resources
• Communication Styles
• Values and Attitudes
Slide Source: National Center for Cultural Competence, © 2010
Contact information
All tools are available on the NCCC website at:
http://nccc.georgetown.edu
National Center for Cultural Competence
1-800-788-2066
Slide Source: National Center for Cultural Competence, © 2010
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