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Consumer-Operated Service Program Multi-Site Research Initiative

Consumer-Operated Service Program Multi-Site Research Initiative

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Page 1: Consumer-Operated Service Program Multi-Site Research Initiative

Consumer-Operated Service Program

Multi-Site Research Initiative

Page 2: 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)

Page 3: Consumer-Operated Service Program Multi-Site Research Initiative

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.

Page 4: Consumer-Operated Service Program Multi-Site Research Initiative

• 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

Page 5: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 6: Consumer-Operated Service Program Multi-Site Research Initiative

Participating Study Sites

• Connecticut

• Florida/California

• Illinois

• Maine

• Missouri

• Pennsylvania

• Tennessee

Page 7: Consumer-Operated Service Program Multi-Site Research Initiative

Participating Study Sites

Page 8: Consumer-Operated Service Program Multi-Site Research Initiative

What is a COSP? A consumer-

operated service is administratively controlled and operated by consumers and emphasizes self-help as its operational approach

Page 9: Consumer-Operated Service Program Multi-Site Research Initiative

Types of Consumer-Operated Services

• Drop-in Centers• Educational &

Advocacy Training Programs

• Peer or Mutual Support Services

Page 10: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 11: Consumer-Operated Service Program Multi-Site Research Initiative

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.

Page 12: Consumer-Operated Service Program Multi-Site Research Initiative

COSP Big Six Outcomes

• Employment• Empowerment• Housing• Service Satisfaction• Social Inclusion• Costs

Page 13: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 14: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 15: Consumer-Operated Service Program Multi-Site Research Initiative

Research Design (2)

Logic Model

Common Protocol

Data Collection

Baseline, 4, 8, 12 months

N=2,230

Page 16: Consumer-Operated Service Program Multi-Site Research Initiative

Research Design (3)

Fidelity/Implementation Assessment• Site Visits• Common Ingredients• Service Matrix• Fidelity Assessment Common Ingredients

Tool (FACIT)

Page 17: Consumer-Operated Service Program Multi-Site Research Initiative

1,927 Study Participants!

Largest Study of Consumer Programs

in History

Page 18: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 19: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 20: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 21: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 22: Consumer-Operated Service Program Multi-Site Research Initiative

Data Entry Screen

Page 23: Consumer-Operated Service Program Multi-Site Research Initiative
Page 24: Consumer-Operated Service Program Multi-Site Research Initiative

• 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

Page 25: Consumer-Operated Service Program Multi-Site Research Initiative

Study Progress Monitoring

• Coordinating Center Reports– Enrollment– Engagement– Cost data– Projections– Power analysis– Baseline equivalencies – Other summaries

Page 26: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 27: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 28: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 29: Consumer-Operated Service Program Multi-Site Research Initiative

Key Operational Values

• Consumer Involvement

• Consumer Education

• Extensive Technical Assistance

• Electronic and Interactive Communications

• Collaboration

• Cultural Competency

Page 30: Consumer-Operated Service Program Multi-Site Research Initiative

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?

Page 31: Consumer-Operated Service Program Multi-Site Research Initiative

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.

Page 32: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 33: Consumer-Operated Service Program Multi-Site Research Initiative

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

Page 34: Consumer-Operated Service Program Multi-Site Research Initiative

Building a Learning Community

Learning is the core objective and thisshould guide decision-making.

Mike English, CMHS

Page 35: Consumer-Operated Service Program Multi-Site Research Initiative

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/