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-funded national 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 Transmitted to CC 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

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 Principles

Consumer Collaboration SC 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 this should 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