Coordinating Center
CC Communiqué

Research ought to and can enhance consumer choice, power, and knowledge*

Annual publication of COSP Coordinating Center 
at the Program in Consumer Studies & Training

Missouri Institute of Mental Health

The Missouri Institute of Mental Health’s Program in Consumer Studies & Training was chosen by the Center for Mental Health Services (CMHS) to coordinate the $20 million Consumer-Operated Service Project (COSP) multi-site research initiative.  This four-year study, which began in September of 1998, is designed to discover to what extent consumer-operated services as an adjunct to traditional mental health services are effective in improving the outcomes of people with serious mental illness.  Consumer-operated programs in the study include drop-in centers, education and advocacy training efforts, and peer or mutual support groups.

During the study, more than 2,500 consumers will take part in the research at eight study sites in California, Connecticut, Florida, Illinois, Iowa, Maine, Pennsylvania, and Tennessee.

The primary goal of the initiative is to (1) examine the effect of consumer-operated services on empowerment, housing, employment, social inclusion, and satisfaction with services and (2) determine how participation in consumer-operated services affects costs for inpatient hospitalization, crisis intervention, and emergency room utilization as well as how it offsets costs in other areas.

A rigorous experimental research design calls for the randomization of study participants to either a control group of traditional mental health services only or to an experimental group of traditional mental health services plus consumer-operated services.

Under the leadership of Jean Campbell, Ph.D., the MIMH COSP Coordinating Center is housed in St. Louis as part of the Program in Consumer Studies & Training at the Missouri Institute of Mental Health (MIMH), University of Missouri School of Medicine.  Data analysis will be conducted by R.O.W. Sciences in Rockville, Maryland under the leadership of Matthew Johnsen, Ph.D.  Project oversight at CMHS is provided by Betsy McDonel, Ph.D., federal program director; Crystal Blyler, Ph.D., government project officer; and Neal Brown, MPA, chief of Community Support Programs.

COSP Web-site Described 
As model for Multi-Site Communications

  One of the hallmarks of the COSP is the effort made to use technology to facilitate work and disseminate information.  As a multi-site research initiative, COSP brings together consumers, researchers, and providers from many different locations across the country.

By using electronic mailing lists, the web, chat rooms, and teleconferencing, the COSP has been able to better manage the research initiative, facilitate dialogue, and share information with interested people not directly involved in the project.

  The CMHS has described the COSP telecommunications system as a “model for communications in multi-site research projects.”

  The telecommunications system was designed by Vicki Wieselthier, COSP communications director.

Extensive Consumer Involvement

Crucial Element of the COSP

  A unique characteristic of the COSP multi-site study is the extensive involvement of consumers in every aspect of the initiative.  In addition to the principal investigator from each of the eight study sites, there are eight voting consumer representatives who serve on the COSP national Steering Committee.  Each study site has a Consumer Advisory Panel that serves as a mechanism for input from consumers at the individual study sites. 

  In addition there is a national Consumer Advisory Panel (CAP) made up of more than 30 consumers which is chaired by Zahira DuVall, director of the Portland Coalition in Portland, Maine.  Its charge is to train consumers involved in the multi-site study in the language of research, to provide mutual support, to advocate for the consumer point of view in the COSP subcommittees and work groups, and to represent the viewpoint of the study participants. 

  At the COSP MIMH Coordinating Center level, several consumers have been hired as staff members.  Further, the Coordinating Center has subcontracted with a number of consumers who serve as consultants to the project. 

 *COSP Publications

During its first year, the COSP produced the following publications:

§         Communications Technologies Technical Assistance Manual

§         Effective Leadership Using Telecommunications Manual

§         Interviewer Training Manual

§         Baseline Common Protocol

§         Selection Criteria & Randomization Discussion Paper

§         Statistical Power in the COSP Studies Discussion Paper

COSP Cultural Competency & Diversity Task Force 

Ensuring Research is Conducted in Sensitive Manner

  Recognizing that there has been a historical mistrust of research in some communities, the Cultural Competency & Diversity Task Force under the leadership of Jaime Delgado, helps to ensure that the COSP multi-site research initiative is conducted in a manner that respects participants’ cultures.

  The task force focuses on issues related to race, ethnicity, gender, linguistics, disability, and age.  It played a key role in review of the COSP research questionnaire (common protocol) in the areas of race, ethnicity, discrimination, spirituality/religion, and sexuality.  It has also been instrumental in developing a cultural competency component of the interviewer training manual for the study sites.

Coordinating Center

Study Sites

Study Sites

Iowa
Sally Rogers, Ph.D.
(617) 353-3549

Pennsylvania
Joseph Rogers
(215) 751-1800 ext. 273

California
Steven Segal, Ph.D.
(510) 849-0731

Tennessee
Wm. Thomas Summerfelt, Ph.D.
(517) 353-5015  

CC Comminique
   Annual publication of COSP Coordinating Center at the Program in
Consumer Studies & Training
Missouri Institute of Mental Health
5400 Arsenal Street
St. Louis, MO 63139