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Steering Committee Notes: July 16, 1999

COSP Special Steering Committee Teleconference Notes

on Selection Criteria

July 16, 1999

Participants: 

Jean Campbell, moderator

Crystal Blyler, Bob Calysn, consultant, Sally Clay, Dianne Cote, Sita Diehl, Zahira DuVall, Louetta Hix, David Lambert, Sarah Lickey, Betsy McDonel, Terrance Means, Carol Mussey, Ruth Ralph, Jean Risman, Sally Rogers, Mark Salzer, Steve Segal, Carol Silverman, Joe Sonnefeld, Jean Stofer, Tom Summerfelt, Greg Teague, Sharon Togut, Daphne Walker-Thoth, Jim Ware, consultant, Brian Yates

Announcements

Tennessee Consumer Advisory Panel Call

Jean Campbell announced that a special teleconference was held with Tennessee’s Consumer Advisory Panel (CAP) yesterday during which she and Betsy McDonel discussed the process involved in development of a common protocol. CAP members there were anxious to get started and did not understand the scope of work involved in developing a protocol. Tom Summerfelt recommended that other sites have these calls. Betsy and Jean both are available and willing to participate in other calls.

Telecommunications Guidebook

The Coordinating Center is in the process of developing a telecommunications guidebook, which includes suggestions on how to better manage teleconferences and when to use other means to facilitate group work.

Moving Ahead with Common Protocol

Jean emphasized the need to move ahead with approval of the common protocol during the July 30th Steering Committee teleconference. She asked the study sites to talk with people at their sites and be prepared to bring concerns to the July 30th discussion. She asked that anyone who will be recommending changes in the common protocol, put these recommendations in writing and send them to her before the meeting.

Inclusion/Exclusion Criteria

Definition of COSP for the Multi-site Study

Sally Rogers reviewed the summary that she and Mark Salzer prepared and distributed on sampling/recruitment and prior consumer-operated services (COS) involvement. Some concern was expressed about the definition of a consumer-operated services program (COSP). Key concerns and suggestions were:

a COSP may be responsible to a higher non-COSP entity, but still be a COSP,

it is important to make the distinction that COSPs are both administratively and programmatically independent because not having financial independence could impact the program offered,

for this multi-site study the definition of COSP may need to be broadened to include those programs that are not 100% independent, but have an impact on participants similar to the impact that a COSP would have, and

perhaps a COSP that is not completely independent could be considered one if the Board of Directors decides where the funding comes from.

It was decided that Sally would refine the definition using the listserv for input.

Exclusion Criteria

On behalf of the Logistics Subcommittee Group, Sally offered the following three proposals to the Steering Committee:

Proposal I: Exclude individuals with any involvement over the 6 months prior to study entry in COSP programs of the same type (drop-in, peer support, or advocacy/education) as the one under study at the site.

Proposal II: Exclude individuals with more than minimal involvement in any COSP program similar to the COSP types represented in the study (drop-in centers, peer support, advocacy and education) in the 6 months prior to study entry. Minimal involvement is defined as up to three contacts during 6 months prior to study entry.

Proposal III: Exclude individuals with any COSP program involvement in the 6 months prior to study entry.

Sally moved for adoption of Proposal III. Mark seconded the motion. The motion was defeated with 10 votes against and 4 votes in favor.

Sally then moved for adoption of Proposal II. Tom seconded the motion. Mark proposed the following friendly amendment and it was accepted: that measurement of intensity of COSP involvement be included. Crystal Blyler proposed the following friendly amendment that was also accepted: that these criteria be tried for three months and then reassessed. Sarah proposed the following amendment that was rejected for now: that people with more than minimal involvement in DMDA and like programs be excluded.

The motion with the two amendments passed with 14 votes in favor, 1 vote against, and 1 abstention.

Sarah Lickey moved to add another criterion to proposal #2 that we exclude people who have had more than minimal involvement (more than 3 contacts in the past 6 months) in any consumer-run mental health related self-help group that is not a part of a traditional service agency which utilizes similar processes to COSP. This will be tried for three months and reassessed. The motion was seconded by Steve Segal.

The motion was defeated with 8 votes against and 7 in favor. Jean pointed out that because of the close vote, some more thinking on this issue might need to occur. Sally Rogers said that because of differences among the study sites, she didn’t know if more discussion would bring us any closer together. Tom then moved that the discussion cease and the Logistics Subcommittee Group make an assessment with each site represented on the call to determine if this is too difficult to do or if there was confusion around the issue. Sally seconded the motion with the understanding that the group would determine if any additional discussion on the issue would be fruitful. There were no objections.

Discussion Points Related to the Proposals

Bob Calysn: His opinion was that Proposal #2 made the most sense for this project. A lot of people will have sampled some kind of COS or self-help group. He said he didn’t think the project wanted to exclude these people. The recommendation to broaden what we consider a COS-like program is a good one. Otherwise if we include people who have been going to a program for a long period of time, we minimize effect impact.

Jim Ware: Jim said from the study design principle, he had strong feelings against Proposal #1. He was comfortable with Bob’s recommendation for Proposal #2, but thought either #2 or #3 were acceptable.

Mark Salzer: Mark said he would probably vote for #3, but his site can do #2.

Zahira DuVall: Zahira said it looked like #2 made the most sense.

Sarah Lickey: Sarah said she couldn’t support #3 because Illinois won’t be able to recruit enough people.

Steve Segal: Steve said #3 had statistical elegance but implementation naivete. We wouldn’t know what we had – the validity of design would be compromised. We have to have a sense of reality about what can be done. Steve said California might be able to do #2, but he was going to vote for #1 because it was the most doable in getting the information and ensuring people didn’t have the intervention under study at the site.

Discussion Points Related to Exclusion of Active Participants in Self-Help Groups

Sarah Lickey: DMDA in Illinois is more of a program with governing bodies. Sarah suggested that people who have been heavily involved in DMDA and SA be excluded or some limit be placed on their involvement in these programs.

Jean Campbell: Jean said the question is could involvement in these groups impact our ability to measure a difference.

Carol Silverman: Carol asked where the dividing line was between informal support groups and more formal programs.

Someone mentioned that informal support group participants may get a lot of COS-like benefits and we don’t really know the impact. At some sites there are numerous self-help groups that use space provided by the traditional mental health services providers. The question was raised about whether people who participate in these would be excluded. These self-help groups are like first generation COS and programs like those involved in the multi-site are second generation COS. It is not clear to consumer if programs are consumer operated.

Sampling/Recruitment

Because there was not adequate time to deal with this issue, it will be discussed in another teleconference Friday, July 23rd at 1 p.m. Eastern Time. Sally suggested that we not refer to these teleconferences as special Steering Committee meetings.

Reconsideration of Items Voted On

Betsy asked that procedures for reconsideration of items previously voted on be discussed during the July 23rd call.