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______________________________________________

February 2, 1999

Consumer-Operated Services

Steering Committee Meeting Notes

Washington, D.C.

Cost Analysis Task Force

Brian Yates

Because of the possible differences in benefit and cost reporting capabilities at traditional services and COS programs, the task force will do a burden of assessment survey to determine the number of activities and types of resources that can be assessed. The major issue discussed was how to collect the data. The idea surfaced that perhaps the consumers should be asked how they spend their time and what services they get instead of extracting this information from the management information systems (MIS). The COS and traditional services MIS might be so different that it would be extremely difficult to obtain the information this way.

The issue keeps coming up about whether or not to assess benefits only under cost savings instead of looking at benefits and inputs. This issue needs to be resolved. Dr. Yates indicated that to determine what resources are typically used for consumers doesn't have to take up a lot of time. It was discovered that some sites aren't collecting measures of service and other sites are collecting and recording everything. Dr. Yates agreed to provide the sites with a questionnaire so that they can determine how much work it would take to gather the data. After the questionnaire is sent to the sites, the sites will discuss it and designate a person for Dr. Yates to speak with.

Research Subcommittee

Tom Summerfelt

All sites were asked to complete an individual logic model by February 10 which would represent a blueprint of the COS programs and detail the assumptions and outcomes and how to get to the desired outcomes. These are needed so that the cross-site logic model can be drafted. Mr. Summerfelt said we need a theoretical model to drive the research in order to avoid disaster.

The Research Subcommittee formed a new subcommittee group called Logistics.

Empowerment

Carol Silverman

This group has already made a recommendation to the Research Subcommittee so it did not meet yesterday. It is waiting on the draft of the logic model.

Satisfaction

Matt Johnsen

This group talked about constructs and what to measure first -- satisfaction with services or global satisfaction.

Under global satisfaction comes issues of quality of life that include economics, housing, and social well-being, but the group is leaving these issues to other subcommittee groups.

The group looked at 6 or 7 satisfaction instruments and 2 or 3 quality of life instruments. This section of the common protocol could take 10 to 15 minutes to administer.

Jo-Anne O'Connor asked if satisfaction with access to services will be measured. Dr. Johnsen said they could possibly ask about unmet service needs. Ms. Silverman said that the Empowerment Subcommittee Group will handle this question.

Sally Clay asked how use of hospitalization or crisis services will be measured. Dr. Johnsen indicated that this was not covered in the measures. It was suggested that re-hospitalization and crisis respite use should come out in the cost study. The Steering Committee recommended that scales be included that measure the meaning and purpose of life. The Satisfaction Subcommittee Group will look at the issue of coercion.

Social Inclusion

This group could not meet because the chairperson was absent. Dr. Campbell asked for an alternate chair. Mr. Summerfelt asked that all of the subcommittee groups appoint alternate chairs.

Housing

Greg Teague

The group reviewed literature and existing instruments. It wants to define what it was that needs to be measured in housing. Since this is not a housing study, the group won't look in-depth at all housing issues. The relevant factors include stability, satisfaction, affordability, choice, safety, typology of housing, and the degree of hope felt about housing situation regardless of the consumer's current situation.

Dr. Campbell asked if neighborhood satisfaction was also being looked at. Social Inclusion is discussing this. The protocol might include some retrospective look at housing history so that stability can be looked at. The group will evaluate the existing instruments and make some choices.

It was recommended that the group look at traditional service providers' outcomes in the area of housing. Ms. Rogers asked if we are looking at outcomes of traditional mental health services overall and not just those of COS programs.

Ms. Ralph suggested that we look at satisfaction with privacy (own bathroom, case managers not just popping in, quiet space in neighborhood). Dr. Johnsen said there is one question about this in the quality of life measure.

Demographics/Employment

Patrick Corrigan

Mr. Corrigan asked for comments on the demographic measure by Friday.

There is an issue about diagnosis-- it is currently in the demographic measure. Questions arose about the need to collect this information and whether or not diagnoses provided by traditional service providers are accurate and can be used. After some discussion, it was decided that a person who has experience with this be asked to join the Consumer Advisory Panel list serv.

A conference call about employment is scheduled for February 8. The following three topics will be discussed: (1) a list of relevant employment domain, (2) a list of criteria by which to judge domains, and (3) considered measures of 6 domains including motivation preparedness attitudes, skills and knowledge, getting and keeping various roles and statuses in work world, satisfaction and acceptance with these roles, income/entitlement/insurance, and the consumer using additional supports in the work world. There are four ways to judge the measures-- (1) do no harm, (2) sensitive to change over time, (3) whether a measure exists, and (4) assessment burden.

It was suggested that the group look at issues of ageism and that it may need to find out the consumer's work history. It might also look at disincentives to work (e.g., sometimes clients are better off staying on SSDI instead of going to work).

The Consumer Advisory Panels at the sites will be asked to test the common protocol instrument.

Consumer Advisory Panel

Zahira DuVall

Ms. DuVall was elected chair, and the panel made a list of issues to be put on the listserv so priorities can be identified. One priority is to look at the issue of obtaining a diagnosis.

Other issues include inclusion on subcommittees, the issue of delay and the impact on COS program, the need for a definition of what represents enhancements and how the enhancement money can be used, barriers to communication, use of language, time demands, and consumer movement history/values/goals, and the need of COS programs to readjust timelines.

It was suggested that a Research 101- Part II be conducted at the next Steering Committee meeting and that the consumer group meet earlier in the day instead of at the end of the day.

Logistical Subcommittee Group

Sally Rogers

This group compiled the following list of tasks that need to be attended to:

Establishing protocol for tracking people who drop out and those who come back into the study

Establishing a data collection schedule

Developing inclusion/exclusion criteria based on what is spelled out in the grant

Developing plans on how to recruit participants into the study - do the sites want to share recruitment strategies?

Developing plan for IRB

Establishing a minimum threshold of COSP (what is considered to be minimal involvement by participants who received service)

Resolving data management issues (what will we do with the data once it is collected, data identification numbers, will data be entered at each site) – Mr. Summerfelt will develop a data entry template

Establishing a publication policy (Mr. Brown has guidelines from other multi-site projects)

Defining random invitation/random assignment

Identifying resources for translating common protocol into other languages

Looking at issues of attrition - will we track people regardless of what they choose?

Identifying ways to join quantitative and qualitative methods

Addressing confidentiality & security of data

Looking at data collection mode

The question was raised about whether participants can be involved in self-help outside of the study site and still qualify. Government guidelines indicate that participants must be involved in traditional services for the past year and can not have received self-help services for six months. If participants can not have been involved in any self-help, there could be a recruitment problem. This issue has to be discussed more and a compromise reached.

Ms. Rogers indicated that the group's next steps will be specified on the list serv. She asked for a representative from each site to serve on the group. Volunteers included: Jo-Anne O'Connor (Connecticut), Ruth Ralph (Maine), Mark Salzer (Philadelphia), Greg Teague (Florida), Carole Silverman (California), Sarah Lickey (Illinois), and Joe Sonnefeld from ROW Sciences.

Process Evaluation Subcommittee Group

Jean Campbell

Dr. Campbell agreed to chair this subcommittee group which will look at qualitative research to see what the sites are doing so that there is a qualitative component to the common protocol.

Group members include: Jean Risman (Maine), Sarah Lickey (Illinois), Louetta Hix (Tennessee), Sara Steber (Pennsylvania), and Brian McCorkle (Iowa).

Mr. Sonnefeld presented a proposed follow-up interview schedule. There will be some data collection points in common. Sites may collect additional data points for local use. Mr. Summerfelt suggested that the Coordinating Center present the dilemma about common collection dates to some experts in the field and find out their recommendations.

Issues

The following list of issues that still need to be resolved was compiled:

Research 101 - Part II

CSX 101 (consumer)

Other measures (environment, relationship) – Greg Teague was asked to chair this subcommittee group

Enhancement – reporting and how enhancement dollars can be used

Economics consultation

Give Betsy and Bill feedback on quarterly report format.

Post on list servs – to do list that has come out of this meeting.

Need list of services back to ROW within 1 week.

Need to have a barometer to show what progress has been made.

Statistical and economic consult

Development of model to train staff to administer common protocol

It was suggested that perhaps there can be weekly Steering Committee teleconferences to resolve some issues and to make decisions in between meetings. The first weekly Steering Committee teleconference was set for February 12 at 3 p.m. Eastern Time.

Next Steering Committee Meeting

The next national Steering Committee meeting will be April 11, 12, 13 in Washington, D.C. If subcommittees are going to meet – they need to give members advance notice.