kenneth j. martinez, psy.d. health and social development american institutes for research

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

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Ethnic/Racial Group Population % of Total White (Non-Hispanic) 202.9 million 63.0%

Latino/Hispanic 54.7 million 17.0% African American 41.3 million 12.8% Asian American 1 million 5.6% American Indian/ Alaska Native 4.1 million 1.3% Native Hawaiian

and other Pacific Islander 1.1 million .3% Bi/multi-racial 6.9 million 2.2% Other Races/Ethnicities 19.0 million___________ People of Color: >128.2 million/331 million Total: 39% (US Census Bureau 2013)

The Color of Americais Changing

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Kenneth J. Martinez, Psy.D. 3


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)

Number and Proportion of all Access Measures


Number and Proportion of all Quality Measures


Kid’s Count 2013

Child and teen deaths per 100,000: 2010

Children living in high-poverty areas:

2007–2011


National Average

African American

American Indian

Asian Hispanic Non-Hispanic White

Two or more races

26 36 30 14 21 25 N.A.

12% 28% 27% 7% 21% 4% 10%

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)



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 4.1

White 4.7 Black 2.1 American Indian or Alaska Native 6.7Native Hawaiian/Other Pacific Islander 7.3 Asian 1.6

Hispanic or Latino 4.9 (SAMHSA 2013)


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 4.3

White 4.5 Black 3.6 American Indian or Alaska Native 8.8 Native Hawaiian/Other Pacific Islander 4.9 Asian 1.7

Hispanic or Latino 5.2(SAMHSA 2013)

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)


Special Analysis for Surgeon General’s Report on Culture, Race

and EthnicityBetween 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:– 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)



Attempts to Solve the ProblemEvidence-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


Evidence-based PracticesDo EBPs take the following into consideration?

– 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).


Dynamic Ecological Model

Historical

Values

Contextual

Transactional

Child/Family

Transactional

Best Practices for Communities

Of Color

Methodological

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Methodological• Paradigm/Conceptualization/ Epistemology

• Empirical• Non-empirical

QualitativePluralistic

• 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

ValuesCultural 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

Domains and Variables

Transactional • Language• Engagement• Synchronous goals• Relationship• Engaging youth, families, & service recipient in research• Availability of providers

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

Best Practice for Developing,

Adapting, Choosing and Using

Evidence BasedTreatments/Empirically SupportedTreatments

Historical• Racism• Ethnocentrism• Colonialism• Displacement• Genocide• Prejudice• Discrimination• Exploitation



Granular EthnicityAncestry, 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.

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)


IOM Recommendations for Standardized Collection of Race, Ethnicity, and

Language Need

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

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 English Language Proficiency

Very well Well Not well Not at all (Limited English proficiency is defined as “less than very well”)

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

OMB Hispanic Ethnicity

Hispanic or Latino Not Hispanic or Latino

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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?


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.



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


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


CDEP Practice Selection

Call for nomination of practices

Criteria used to identify practices:– 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


CDEP Data CollectionSite 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 processKenneth J. Martinez, Psy.D.

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1. Capacity-building and consciousness-raising

2. Raising public awareness about mental health

3. Community outreach

4. Increasing service accessibility

Types of Community or Culturally-Based Practices Identified


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Types of Community or Culturally-Based Practices Identified

5. Innovative engagement practices

6. Organizational practices

7. Local adaptations of EBPs for Latinos

8. Interventions and therapies


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


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


Organizational Factors that Facilitate CDE

1. Flexible organizational structure

2. Partnerships

3. Key figure or champion

4. Advocacy role


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


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”



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

Gracias

Kenneth J. Martinez, Psy.D.37

ReferencesAgency 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, 52:1179-1189.

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.

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.


kenneth j. martinez, psy.d. health and social development american institutes for research

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