Consumer-Operated Service Program

1. Consumer Operated Service Program (COSP) Consumer-Operated Service Program Multi-Site Research Initiative

2. 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)

3. 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.

4. Features of COSP • Multisite Study: • Seven study sites located throughout • the U.S. • Coordinating Center in • Missouri • Four years of research supported • Randomized experimental design

5. Consumer-Operated Service Program 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 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

6. Connecticut Florida/California Illinois Maine Missouri Pennsylvania Tennessee Participating Study Sites

7. Participating Study Sites

8. What is a COSP? A consumer-operated service is administratively controlled and operated by consumers and emphasizes self-help as its operational approach

9. Types of Consumer-Operated Services • Drop-in Centers • Educational & Advocacy Training Programs • Peer or Mutual Support Services

10. 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

11. 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.

12. COSP Big Six Outcomes • Employment • Empowerment • Housing • Service Satisfaction • Social Inclusion • Costs

13. 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

14. 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

15. Research Design (2) Logic Model Common Protocol Data Collection Baseline, 4, 8, 12 months N=2,230

16. Research Design (3) Fidelity/Implementation Assessment • Site Visits • Common Ingredients • Service Matrix • Fidelity Assessment Common Ingredients Tool (FACIT)

17. 1,927 Study Participants! Largest Study of Consumer Programs in History

18. 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

19. 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

20. MIMH Files from 7 Sites Data Entry Merged Files Multiple Files Transmitted to CC Data Analyzed Merged Files ROW Data Trail Common Protocol

21. 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

22. Data Entry Screen

24. Study Progress Monitoring • 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

25. Study Progress Monitoring • Coordinating Center Reports • Enrollment • Engagement • Cost data • Projections • Power analysis • Baseline equivalencies • Other summaries

26. 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

27. 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

28. 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

29. Key Operational Values • Consumer Involvement • Consumer Education • Extensive Technical Assistance • Electronic and Interactive Communications • Collaboration • Cultural Competency

30. 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?

31. COSP Basic Principles

32. 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

33. 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

34. Building a Learning Community Learning is the core objective and this should guide decision- making. Mike English, CMHS

35. 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/ Consumer Operated Service Program (COSP)