Transcript 'Evidence Based Practices and Culture: Complementary or

Shaping Behavioral Health Policy
by Measuring Evidence in a New Way:
Community Defined Evidence
Kenneth J. Martinez, Psy.D.
Health and Social Development
American Institutes for Research
March 3, 2014
The Color of America
is Changing
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Population
202.9 million
54.7 million
41.3 million
1 million
63.0%
17.0%
12.8%
5.6%
4.1 million
1.3%
% of Total
Kenneth J. Martinez, Psy.D.
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Ethnic/Racial Group
White (Non-Hispanic)
Latino/Hispanic
African American
Asian American
American Indian/
Alaska Native
Native Hawaiian
and other Pacific
Islander
Bi/multi-racial
Other Races/Ethnicities
1.1 million
.3%
6.9 million
2.2%
19.0 million___________
People of Color: >128.2 million/331 million Total: 39%
(US Census Bureau 2013)
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The Problem
Disparities in mental health care
are widening between whites and
people of color, particularly in the
areas of access, availability,
quality and outcomes of care.
Collectively, ethnically/racially
diverse populations experience a
greater disability burden from
emotional and behavioral
disorders than do white
populations. (Huang, 2002; U.S. Dept. of Health
and Human Services [USDHHS], 2001)
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Number and Proportion of all Access Measures
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Number and Proportion of all Quality Measures
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Kid’s Count 2013
National
Average
African
American Asian
American Indian
Hispanic
NonHispanic
White
Two or
more
races
Child and teen deaths per 100,000: 2010
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36
30
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21
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N.A.
Children living in high-poverty areas:
2007–2011
12%
28%
27%
7%
21%
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4%
10%
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Alcohol and Drug Abuse Among
Youth in U.S.
6.8% of persons aged 12 or older (an estimated 17.7 million
individuals) in 2012 were dependent on or abused alcohol
within the year prior to being surveyed. This rate is a decrease
from 2008 (7.4%).
7.7% of persons aged 12 or older who were dependent on or
abused alcohol in 2012 (an estimated 1.4 million individuals)
received treatment for alcohol use within the year prior to
being surveyed.
9.5% of 12- to 17-year-olds (an estimated 2.4 million youth) in
2012 reported using illicit drugs within the month prior to being
surveyed.
(SAMHSA, 2013)
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Percentages of Youth Ages 12 to 17 with Alcohol
Dependence or Abuse in the Past Year, by
Race/Ethnicity: 2008-2012 NSDUH
Race/Ethnicity
Non-Hispanic
White
Black
American Indian or Alaska Native
Native Hawaiian/Other Pacific Islander
Asian
Hispanic or Latino
%
4.1
4.7
2.1
6.7
7.3
1.6
4.9
(SAMHSA 2013)
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Percentages of Youth Ages 12-17 with Illicit Drug
Dependence or Abuse in the Past Year, by
Race/Ethnicity: 2008-2012 NSDUH
Race/Ethnicity
Non-Hispanic
White
Black
American Indian or Alaska Native
Native Hawaiian/Other Pacific Islander
Asian
Hispanic or Latino
%
4.3
4.5
3.6
8.8
4.9
1.7
5.2
(SAMHSA 2013)
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Major Depressive Episodes (MDE)
Among Youth 12-17 Years of Age
From 2008 to 2012, the rate of MDE among U.S. youth
increased from 8.3% to 9.1%, (an estimated 2.2 million
youth). The rate of MDE increased among Hispanics (from
7.5% to 10.5%) but not among Whites or Blacks.
In the U.S., 37% of youth with MDE (an estimated 813,000
youth) in 2012 received treatment for depression within the
year prior to being surveyed. This rate has not changed
significantly since 2008.
Hispanic youth who had an MDE in the past year were less
likely to have received treatment for depression (30.8%) than
White youth (40.7%).
(SAMHSA 2013)
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Special Analysis for Surgeon
General’s Report on Culture, Race
and Ethnicity
Between 1986 and 2001, nearly 10,000
participants were included in randomized
controlled trials evaluating the efficacy of
interventions for four mental health conditions
(bipolar disorder, schizophrenia, depression and
ADHD) and included only:
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561 African Americans (5.6%)
99 Latinos (.01%)
11 Asian Americans and Pacific Islanders (.001%)
0 American Indians and Alaska Natives were available for
analysis.
– Not a single study analyzed the efficacy of the treatment by
ethnicity or race.
(Miranda et al., 2003)
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Attempts to Solve the Problem
Evidence-based practice (EBP)
Is the EBP “Gold Standard” culturally appropriate?
– Most EBP trials are conducted with White,
educated, verbal and middle class individuals
and may not generalize to ethnic/racial groups
and third world communities (Bernal & Scharron-del-Rio, 2001)
– Empiricism (upon which randomized-controlled
trials are based) is a western epistemological
model
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Evidence-based Practices
Do EBPs take the following into consideration?
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Historical trauma
Cultural values, beliefs, traditions and preferences
Contextual, transactional and societal variables relating
to the emotional and physical environments in which
the individual lives
Some do and some do not
“The central problem is that treatments
that have been validated in efficacy
studies cannot be assumed to be effective
when implemented under routine practice
conditions” (Hoagwood et al., 2001).
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Dynamic Ecological Model
Transactional
Transactional
Contextual
Values
Historical
Child/Family
Methodological
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Best
Practices for
Communities
Of Color
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Domains and Variables
Values
Historical
•Racism
•Ethnocentrism
•Colonialism
•Displacement
•Genocide
•Prejudice
•Discrimination
•Exploitation
Cultural beliefs
•Spirituality and Religion
•Concepts of:
•Familismo/Personalismo/Dignidad
•Respeto (Respect)
•Cultural Humility
•Communal vs. Individualistic
•Cooperation vs. Competition
•Interdependence vs. Independence
•Rituals
•Traditions
•World view
Contextual
•SES
•Immigration status
•Generation in US
•Degree of political power
•Transnationalism
•Geographic region
•Cultural knowledge
•Acculturation level
•Self-identified cultural identity
•Heterogeneity within culture
•Respect for community knowledge
•Setting
•Age
Methodological
Best Practice for
Developing,
Adapting, Choosing
and Using
Evidence Based
Treatments/
Empirically
Supported
Treatments
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•Paradigm/Conceptualization/
Epistemology
•Empirical
•Non-empirical
Qualitative
Pluralistic
•Efficacy vs. Effectiveness
•Definition of evidence
•By whom?
•Using what standard?
•Compared to what?
•Research approach
•Traditional (Top down)
•Community defined (Bottom up)
•Data collection/analysis/interpretation
•Translation
•Clinician/service recipient match
Transactional
•Language
•Engagement
•Synchronous goals
•Relationship
•Engaging youth, families, &
service recipient in research
•Availability of providers
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Granular Ethnicity
Ancestry, which the Census Bureau defines as “a person’s
ethnic origin or descent, ‘roots,’ or heritage, or the place of
birth of the person or the person’s parents or ancestors
before their arrival in the United States” is the ethnicity
concept adopted by the subcommittee as the level of detail
necessary for quality improvement.
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Collect granular ethnicity data as a separate variable from
the OMB race and Hispanic ethnicity categories
Granular ethnicity categories should be selected from a
national standard list
(Institute of Medicine, 2009)
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IOM Recommendations for Standardized
Collection of Race, Ethnicity, and
Language Need
 Hispanic or Latino
 Not Hispanic or Latino
OMB Race
(Select one or more)
 Black or African
American
 White
 Asian
 American Indian or
Alaska Native
 Native Hawaiian or Other
Pacific Islander
 Some other race
Spoken English Language
Proficiency
Language Need
Race and Ethnicity
OMB Hispanic Ethnicity
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Very well
Well
Not well
Not at all
(Limited English proficiency is
defined as “less than very well”)
Granular Ethnicity
 Locally relevant choices
from a national standard
list of approximately 540
categories with CDC/HL7
codes
 “Other, please
specify:___” response
option
 Rollup to the OMB
categories
Spoken Language Preferred
for Health Care
 Locally relevant choices from a
national standard list of
approximately 600 categories
with coding to be determined
 “Other, please specify:__”
response option
 Inclusion of sign language in
spoken language needs list
and Braille when written
language is elicited
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Community Defined Evidence
Project (CDEP) Research Questions
Can we identify “effective” community and/or culturally
based practices, who is doing them and how they are
being done?
What are the common characteristics or “essential
elements” among these practices that may help us better
define Community Defined Evidence for Latino/Hispanic
communities?
Is there formal or informal measurement of effectiveness
that is being used with such practices? If so, can we
document these measures?
Are there culturally-informed methodologies and
measurement practices that involve the community?
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Community Defined Evidence
A research model that emphasizes investigation “from
the ground up” (Martinez et al., 2010).
A basic tenet of CDE is that service recipients have
knowledge based upon life experience and learned
expertise that is rarely tapped to inform scientific study,
especially in developing behavioral health practices.
CDE seeks to identify and affirm alternative and existing
forms of knowledge about behavioral health and
wellness and to use traditional and indigenous ways of
knowing to develop and implement practices that are
ultimately acceptable and useful to the populations that
are expected to use them.
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Community Defined Evidence
Initial Working Definition
CDE is a set of practices that have
been found to yield positive results
as determined through ongoing
efforts to achieve community
consensus, and which have reached
a level of acceptance by service
recipients despite varying degrees of
empirical measurement of practice
effectiveness. (2012)
A complementary approach to EBPs
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CDEP
Community Steering Group
Composed of family members, youth leaders,
consumers, disparities researchers, practitioners
and policy makers
Provided input on developing methods that
facilitate community participation (nomination
process, site selection process) and reviewed
information gathered
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CDEP Practice Selection
Call for nomination of practices
Criteria used to identify practices:
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Knowledge of the population(s) of focus
Clear articulation of practice
Evidence of practice utilization
Potential for demonstrating outcomes
Demonstrated (or potential) sustainability of practice and
related outcomes
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CDEP Data Collection
Site visits
Telephone interviews
11 to 21 in depth interviews conducted for
qualitative analysis with stakeholders at each site
(246 interviews completed)
– Cross-section of organizational staff
– Service recipients and family members and
– Community partners
Survey questions to record demographic data and
perceptions related to culturally responsive
service delivery
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Criteria Used to Review
Identified Practices
1) 1. A process that includes the community
2) 2. Develop a practice with community involvement and
expertise
3) 3. Test and implement the practice, including community
input
4) 4. Assess implementation and utilization of
the practice
5) 5. Continuous quality improvement process
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Types of Community or CulturallyBased Practices Identified
1. Capacity-building and consciousness-raising
2. Raising public awareness about mental health
3. Community outreach
4. Increasing service accessibility
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Types of Community or CulturallyBased Practices Identified
5. Innovative engagement practices
6. Organizational practices
7. Local adaptations of EBPs for Latinos
8. Interventions and therapies
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Essential Elements (Common
Characteristics) Across Practices
1. Acknowledging the centrality of the family
2. Creating and encouraging a collective
healing process
3. Addressing needs holistically
4. Addressing stigma and using culturally
relevant terms
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Essential Elements (Common
Characteristics) Across Practices
5. Engaging in dialogue about the practice with
community members and service recipients on an
ongoing basis
6. Increasing community connections by partnering
with organizations important to local Latino/
Hispanic communities
7. Implementing practice in comfortable and
familiar practice settings
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Organizational Factors that
Facilitate CDE
1. Flexible organizational structure
2. Partnerships
3. Key figure or champion
4. Advocacy role
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Community Defined Evidence Examples
Therapeutic Drumming – San Francisco, CA
Enlace Comunitario - Albuquerque, NM
Bienvenido Program - Lingonier, IN
Sisters of Color United - Denver, CO
Comunilife - New York City, NY
Hoy Recovery Program - Espanola, NM
Chemical Abuse Services Agency Bridgeport, CT
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Policy, Research, and Practice
Conclusions
Proceed with caution
Consider ESTs/EBTs/EBPs/CA-EBTs/PBE/CDE
all as options
Cost is a consideration
Let’s not be “empiri-centric”!
Include, and not dismiss, practices that have
“worked” in communities
We need to discover and/or develop the
evidence
Consider a new measuring stick, “platinum
standard”
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Next Steps
– Share the knowledge gained
– Engage families, youth and
communities
– Influence policy efforts
– Refrain from “legislating” types
of practices that will be funded
– Advocate for “effectiveness”
measures that are culturally and
community appropriate
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Gracias
References
Agency Healthcare Research and Quality, 2012 National Healthcare
Quality and Disparities Report.
Annie E. Casey Foundation, Kid’s Count Data Book: State Trends in
Child Wellbeing (2013).
Bernal, G. & Scharron-del-Rio, M.R. (2001). Are empirically supported
treatments valid for ethnic minorities? Toward an alternative
approach for treatment research. Cultural Diversity and Ethnic
Minority Psychology, 7: 328-342.
Hoagwood, K., et al. (2001). Evidence-based practice in child and
adolescent mental health services. Psychiatric Services, 52:11791189.
Huang, L. (2002). Reflecting on cultural competence: A need for renewed
urgency. Focal Point, 16 , 4-7.
Martínez, K.J., Callejas, L., Hernandez, M. (2010) Community-Defined
Evidence: A bottom-up behavioral health approach to measure what
works in communities of color. Emotional and Behavioral Disorders in
Youth. Volume 10, No. 1. Civic Research Institute, Kingston, N.J.
37
Kenneth J. Martinez, Psy.D.
References
Miranda, J., Nakamura, R., & Bernal, G. (2003). Including ethnic
minorities in mental health intervention research: A practical
approach to a long-standing problem, Culture, Medicine &
Psychiatry, 27 , 467-486.
Substance Abuse and Mental Health Services Administration.
Behavioral Health Barometer: United States, 2013. HHS Publication
No. SMA-13-4796. Rockville, MD: Substance Abuse and Mental Health
Services Administration, 2013.
U.S. Department of Health and Human Services .(2001). Mental health:
Culture, race, and ethnicity – A supplement to mental health: A
report of the Surgeon General. Rockville, MD: U.S. Department of
Health and Human Services, Substance Abuse and Mental Health
Services Administration, Center for Mental Health Services.
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