consumer-operated service program multi-site research initiative
TRANSCRIPT
Consumer-Operated Service Program
Multi-Site Research Initiative
Consumer-Operated Service Program
Research ought to and can enhance consumer choice, power, and knowledge*
*From Consumer/Survivor Mental Health Research & Policy Work Group (1993)
Consumer-Operated Service Program
The Consumer-Operated Service Program (COSP)Multi-site Research Initiative is a federally-fundednational effort to discover to what extent consumer-
operated programs as an adjunct to traditional mental health services are effective in improving the outcomes of adults with serious mental illness.
• Multisite Study: Seven study sites located throughout the U.S. Coordinating Center in Missouri
• Four years of research supported
• Randomized experimental design
Features of COSP
Consumer-Operated Service Program
Coordinating Center
Missouri Institute of Mental Health*Jean Campbell, Ph.D., principal investigator
University of Massachusetts Medical Center*Matt Johnsen, Ph.D., co-principal investigator
Federal Representatives
Substance Abuse and Mental Health Services Administration (SAMHSA)
Center for Mental Health Services (CMHS)*Betsy McDonel, Ph.D., federal program director
*Crystal Blyler, Ph.D., government project officer
Participating Study Sites
• Connecticut
• Florida/California
• Illinois
• Maine
• Missouri
• Pennsylvania
• Tennessee
Participating Study Sites
What is a COSP? A consumer-
operated service is administratively controlled and operated by consumers and emphasizes self-help as its operational approach
Types of Consumer-Operated Services
• Drop-in Centers• Educational &
Advocacy Training Programs
• Peer or Mutual Support Services
COSP Goals• Establish the extent to which consumer-
operated services are effective in improving selected outcomes for consumers of mental health services
• Create strong and productive partnerships among consumers, service providers and service researchers
• Disseminate the knowledge gained
Target Population Study participants are defined as persons age
18 and over who currently or at any time over the past year have had a diagnosable mental, behavioral, or emotional disorder of sufficient duration to meet diagnostic criteria specified within the DSM-IV that has resulted in functional impairment which substantially interferes with or limits one or more major life activities.
COSP Big Six Outcomes
• Employment• Empowerment• Housing• Service Satisfaction• Social Inclusion• Costs
Cost Study Questions To what extent does participation in
consumer-operated service programs affect costs for the following:• inpatient
• crisis intervention
• emergency room utilization
• offsetting costs in housing, criminal justice, vocational rehabilitation, physical health care, and income support
Research Design (1)Rigorous Methodology
• Multi-site Design• Random Assignment• Experimental
Intervention: Consumer-Operated Program + Traditional Mental Health Services
Control: Traditional Mental Health Services Only
Research Design (2)
Logic Model
Common Protocol
Data Collection
Baseline, 4, 8, 12 months
N=2,230
Research Design (3)
Fidelity/Implementation Assessment• Site Visits• Common Ingredients• Service Matrix• Fidelity Assessment Common Ingredients
Tool (FACIT)
1,927 Study Participants!
Largest Study of Consumer Programs
in History
Multisite Data Repository• Coordinating Center responsibility
• Data electronically transferred via the internet from 8 sites across the country
• Multiple data points in one database
• Over 1700 data elements with 12,566,400 observations
• Data consistency capabilities through queries
Data Repository Specifications• Database
– Microsoft Access 97 (version 8)– self documented– secured (user ID and password)– encrypted
• Backups– backup plan required from sites– daily, monthly rolling backups– quarterly permanent backups
Data Trail
Common
Protocol MIMH
Data Entry
Multiple Files
Merged Files
Transm
itted
to C
C
Files from 7 Sites
ROW
Merged Files
Data Analyzed
Data Entry Program • Created to allow data entry at the site level• Missing variables not allowed• Programmed to allow only in-range
responses• Designed for “heads down” data entry• Automated skip patterns• Required double entry verification
Data Entry Screen
• Site Reports to Coordinating Center– Weekly Flash Report
• Track enrollment by condition
– Quarterly Report• Report on recruitment, enrollment, and attrition
• Report cost data status
• Narrative on site accomplishments, problems encountered, and goals
Study Progress Monitoring
Study Progress Monitoring
• Coordinating Center Reports– Enrollment– Engagement– Cost data– Projections– Power analysis– Baseline equivalencies – Other summaries
Quality Control Functions
• On-going monitoring of standardized interviewing– Interviewer Alerts– Updates to the Question by Question Manual
• Follow-up windows monitored
• Patterns of missing variables tracked
• Collection of diagnoses monitored
Common Ingredients (1)
• Structure– Consumer-Operated
– Participant responsive
– Links to other supports
• Environment– Accessibility
– Safety
– Informal Setting
– Reasonable accommodation
•Belief Systems–Peer principal
–Helpers principle
–Empowerment
–Choice
–Recovery
–Acceptance and Respect for diversity
–Spiritual growth
Common Ingredients (2)• Education
– Self-management/problem solving
– Education
• Advocacy– Self-advocacy
– Peer advocacy
– Systems advocacy
•Peer Support–Peer support
–Telling out stories
–Consciousness-raising
–Crisis Prevention
–Peer mentoring and teaching
Key Operational Values
• Consumer Involvement
• Consumer Education
• Extensive Technical Assistance
• Electronic and Interactive Communications
• Collaboration
• Cultural Competency
Building Partnerships
• Can consumers, service providers, and researchers complement each other’s strengths?
• Do joint efforts yield the most effective service delivery model possible?
• Will consumer-operated services have a crucial role to play in mental health service delivery system?
COSP Basic Principles1. Focus on the situation, issue, or behavior,
not on the person.
2. Maintain the self-confidence and self-esteem of others.
3. Maintain constructive relationships.
4. Take the initiative to make things better.
5. Lead by example.
Consumer CollaborationSC Consumer Involvement
SC Consumer Representatives
Consumer Advisory Panel
Study Sites Consumer Involvement
Site Consumer Advisory Boards
Consumer Researchers
CC Consumer Research Support
Research Glossary
Workshops
Technical Assistance
Building Trust
Policies to ensure access to project information
Supportive communications infrastructure
Defined decision-making process
– Telling our stories
– Use of the language “we,” “our” and “us”
– Voting, focus groups, and ad hoc subcommittee meetings
Building a Learning Community
Learning is the core objective and thisshould guide decision-making.
Mike English, CMHS
Consumer-Operated Service Program
One of the hallmarks of the COSP is the effort made to use
technology to facilitate work and disseminate information.
Visit our website
http://cosp.mimhtraining.com/