Cultural Competence and Consumer Involvement: Practice and Theory Lisa Magged, MA November 5, 2007

Outline Cultural Competence and Consumer Involvement Consumer Involvement in the Mental Health HIV Services Collaborative (MHHSC) Program Implications of the MHHSC as a demonstration Health Resources and Services Administration (HRSA) – Lewin Organizational Cultural Competence Assessment Framework Consumer involvement

Cultural Competence and Consumer Involvement Convergence in the late 1980s Cultural Competence scope shift Cross-cultural patient-provider interaction  organizational level Address communities and health care systems in the context of issues such as racism, prejudice, and the social determinants of health [Beach, M.C., Saha, S. & Cooper, L.A. (2006). The Role and Relationship of Cultural Competence and Patient-Centeredness in Health Care Quality. New York: The Commonwealth Fund.] Federal government commitment Proliferation of organizational cultural competence assessment tools Consumer involvement identified as a key component of cultural competence

Mental Health HIV Services Collaborative (MHHSC) Program Background: MHHSC followed on the heels of the HIV/AIDS Mental Health Demonstration Program – the first federal initiative to focus on the mental health needs of people living with or affected by HIV. [DHHS/SAMHSA/NIH/HRSA] Purpose: To provide effective, cultural competence mental health services specific to the needs of HIV+ individuals in minority communities 20 Community-based organizations were funded by Center for Mental Health Services (CMHS) to provide mental health services to individuals with HIV or AIDS in underserved communities From 2001-2006 5,329 clients were served in total 50% African American; 28% Hispanic/Latino Abt Associates served as Evaluator and Coordinating Center (3 years)

Consumer Advisory Board MHHSC-specific CAB was a condition of funding Reflective of target population for MHHSC program Members: Individuals living with or affect by HIV who also had a mental illness CABs were intended to: function as formal entities within each MHHSC grantee organization be characterized by an identifiable organizational structure, membership, and activities facilitate cultural competence 10 of 20 MHHSC sites had a CAB prior to MHHSC, either for the agency overall or for a specific program

Methods Site visits were conducted in Years 1,3,5 2 full days; usually group interviews Interviews with administrative, clinical, evaluation staff (including CAB liaison) Interviews with Consumer Advisory Board representatives Semi structured site visit protocol Site visit reports written after each site visit Site visit reports (Year 3 and 5) read into NVIVO; coded; and analyzed

Findings: Challenges to Developing a CAB During the 1st two years of MHHSC few grantees could maintain a CAB; more than half disbanded  By Year 5, 14 sites were able to initiate and maintain a CAB Establishing Infrastructure Clear mission or set of goals Governance (officer roles, membership criteria) Recruitment and orientation processes Membership criteria CAB liaison to MHHSC Program staff Recruitment and retention of CAB members and leaders Training of CAB members and leaders Organizational support (computer access, meeting space, agendas) Incentives (monetary and non monetary)

Findings: CAB Infrastructure Years 3 to 5   Year 3 Year 5 Mission Statement Yes 6 30% 14 70% No 11 55% 5 25% Developing 3 15% 1 5% Orientation Process 7 35% 2 10% Recruitment Process 9 45% 15 75% 10 50% 0% Membership Criteria 13 65% 4 20% Unknown Roles for Officers 12 60%

Findings: CAB Activities Develop Infrastructure Emotional and social support group Education and Outreach Advocacy Input on MHHSC Organizational/Program Activities Leadership Development

Findings: Institutional staff and CAB development CAB site liaisons were integral to CAB activities by : Assisting with meetings/organization and orientation/introduction of new members Functioning as a mediator and advisor Relaying concerns to staff Very limited CAB development and activities in 5 years 7 CABs were unable to move beyond infrastructure development 3 CABs unable to move beyond emotional and social support 7 CABs provided input on organizational and program activities 3 CABs involved in advocacy (one-time events) 2 CABs with 2 to 3 members in leadership training

Discussion How does this demonstration inform our understanding of cultural competence and consumer involvement in mental health?

HRSA-Lewin Organizational Cultural Competence Assessment Framework Framework adopted by the MHHSC project (CMHS, Abt Associates, and site representation) to guide implementation 7 Domains Organizational Values Governance Planning and Monitoring/Evaluation Communication Staff Development Organizational Infrastructure Services/Interventions

Insights from MHHSC Lack of specificity Does not account for: HRSA-Lewin Framework and consumer involvement: Lack of specificity Does not account for: Roles of institutional actors – e.g. Site Liaison Needs assessment Theory of change Empowerment and service improvement spectrum There are many reasons for involving consumers: Implications of institutionalizing consumer involvement through CABs

Conclusion and Recommendations Consumer involvement should be facilitated by: Strategic Planning Needs assessment Capacity of organization to support consumer involvement (finances, human resources, operations) Theory of Change Accounts for purpose of consumer involvement Means of the intervention Processes Outcomes Evaluation and Evolution Assessment frameworks – Include indicators to account for human resources to support consumer involvement

Questions or Further Information Lisa Magged Abt Associates Inc. lisa_magged@abtassoc.com 312-867-4035