Participants Jean Campbell, moderator Crystal Blyler Sally Clay Pat Corrigan Dianne
Cote Jaime Delgado Susan Essock Larry Harmon Louetta Hix Matt Johnsen Lorraine Keck Anika
Keens-Douglas Ed Kramer David Lambert Sarah Lickey Danyelle Mannix Brian McCorkle Betsy
McDonel Carol Mussey Jean Risman Sally Rogers Mark Salzer Bonnie Schell Steve Segal Carol
Silverman Jean Stofer Tom Summerfelt Greg Teague Daphne Walker-Thoth Brian Yates Eileen
Zeller
Teleconference on Selection Criteria/Randomization with Jim Ware Daphne
Walker-Thoth
announced that the first hour of the regularly scheduled Steering Committee teleconference
July 9 at 2 p.m. Eastern Time will be devoted to a dialogue with Dr. Jim Ware. Dr. Ware's
biographical sketch will be posted on Onelist prior to the teleconference. He is sometimes
mistaken for John Ware, the developer of the SF-12 health scale. R.O.W. Sciences Site
Visits
Eileen Zeller reported that study site visits will begin in September and hopefully be
concluded by the end of the calendar year. She has spoken individually to all sites except
Illinois. No site has actually scheduled a visit yet. Because some questions were raised
and concerns expressed, Eileen asked for volunteers to serve on a small work group that
will address site visit issues and review the site visit protocol. Tom
Summerfelt, David
Lambert, Brian McCorkle, and Sally Clay agreed to serve. Steve Segal stated that one issue
is the extent to which traditional service providers are burdened by such site visits.
They are not being directly rewarded for participating and are already overburdened and
working under tight budgets. It is important not to interfere with the balanced
relationships that the COS have worked out with the traditional providers. Another issue
was how sites could convene focus groups of consumers with the traditional sites. Jean
Campbell asked that these and other such issues be posted on the list serv so that they
can be discussed and addressed prior to the beginning of the site visits. Eileen will
coordinate a teleconference of the work group. Betsy McDonel said that if COSP was going
to be looking at common ingredients, this needed to be part of the site visit. Eileen said
R.O.W. will identify where the overlap is since there has been a great deal of discussion
about fidelity, implementation evaluation, and common ingredients.
Betsy recommended that a common ingredients work group be formed. Matt Johnsen will
serve as co-chair and will entertain suggestions for a co-chair. Anyone interested in
taking part in this work group should contact R.O.W. Carol Mowbray of the University of
Michigan is working on a fidelity measure for a drop-in center that should be helpful.
Report on Telecommunication Issues Larry Harmon, MIMH network administrator, apologized
for the problems with the list servs. Larry works with the hardware aspects of the COSP
list servs, whereby Vicki Wieselthier works on the website design and maintenance. He has
worked hard to unravel the mystery because when the system was initially set up, everyone
was able to receive the mail from the lists, and nothing changed on MIMH's end. The
problem seemed to have emerged when the larger commercial Internet providers implemented
stronger network security in their e-mail areas. This resulted in problems with AOL,
Compuserve, Juno, Hotmail, Prodigy, Earthlink, and some Netscape. The MIMH service
providers were contacted to see if MIMH was on one of the black ball lists and its mail
was being rejected. This was not the case. Next, MIMH's mail was rerouted through its
service provider. This didn't work. Since COSP members were able to get individual mail
even though some couldn't get it through the list serv, everything was relayed to MIMH's
regular server, and this didn't work either. Larry then joined a technical discussion
group on lists, contacted everyone who had similar problems in the past year, and
implemented their suggestions that he thought might work. He has even looked at other list
serv software in case the problem was with Lyris. AOL changed its e-mail address and as a
result some of its mail was not being delivered. It assured Larry that the problem was
taken care of a few days ago. The computer with the list serv at MIMH is not totally
dedicated to Lyris. The problem could be related to domain name service. Larry has
identified a computer that will be dedicated solely to Lyris. He believes this will get
around the DNS problems and network address problems. He began configuring the computer
yesterday. It will take until next week to transfer the data. He asked that COSP give him
one more week. COSP members will not have to do anything different - the Internet
interface will remain the same and the e-mail addresses. If anyone would like to speak
with Larry, he can be reached at (314) 644-8692 or e-mail can be sent to him at harmonl@mimh.edu. Betsy thanked Larry for his efforts
and said the establishment of the Onelist while these problems are being worked out has
been helpful.
Logistics Subcommittee Group Report Matt reported that there was a teleconference
yesterday at which a synthesis report was reviewed of information sites submitted on other
COS and descriptions of how study participants flowed into the study. The subcommittee
used the information to focus on exclusion criteria. Three scenarios were developed for
presentation to Dr. Ware for input. #1: If applicant has received any consumer-operated
services similar to those of the COSP under study at the site in the past 6 months, that
person will be excluded from the study. The name of the place where services were received
would be obtained from the applicant and the study site would be responsible for
determining if the place was a consumer-operated services or not using the following
definition: A COS is a program in which hiring/firing decisions are made by consumers, the
program is managed by consumers, services are delivered by consumers, AND the program is
not administratively responsible to a larger non-COS entity. Under this scenario, the
intensity of service received in other COS would have to be measured at baseline. #2: If
an applicant had more than three contacts with any consumer-operated service as defined in
the GFA (drop-in, educational, or peer support) in the past 6 months, that person will be
excluded from the study. This scenario would be implemented for three months and revisited
to see if recruitment problems are resulting. Under this scenario, intensity of
involvement with consumer-operated services would be measured in the common protocol. #3:
This scenario is the same as #2 except it would not allow applicants to have had any
contact with consumer-operated services. The first scenario would allow for clean
within-site comparisons between traditional and COS. The second and third would allow for
clean within-site between traditional and COS as well as cross-site comparisons that would
distinguish between those receiving traditional services and those receiving COS. Some
concern was expressed about what programs would qualify as COS. The definition that was on
the Report on Other Consumer-Operated Services in Study Catchment Area has been changed so
that to qualify as a COS a program must be one in which the hiring/firing decisions are
made by consumers, the program is managed by consumers, services are delivered by
consumers, and the program is not administratively responsible to a larger non-COS entity.
Jean Campbell pointed out that a program might not be considered a COS if half the board
is consumers and half the staff are consumers, but the effect from participation in that
program may be the same effect obtained from participation in a COSP. We need to identify
the effect of COS, but if people are receiving similar services from non-COS that are
indistinguishable to the consumer, our study may show no effect. Betsy suggested that we
measure prior experience with programs that might have some of the ingredients of a
COSP,
but not all of the ingredients. Dianne Cote said COS are based on choice. The next
Logistics teleconference is Monday, June 12 at 3:30 p.m. Eastern Time.
Side Effects Work Group Report Jean Risman, chair, reported that the group's
recommendation was to use the Hopkins checklist as a side effects measure with all 25
items. The checklist should be piloted to see if it can be trimmed. Betsy said the place
to study new scales was in the site-specific and cluster studies and not in the multi-site
study. The multi-site needs to include scales with psychometric properties. Jean said she
was not aware of this information when the group was assigned its task. Sally Clay had
expressed concern in the work group that we were in a cycle in which we can't measure
anything new. Jean said one of the reasons for including the side effects measure is that
it is an issue of particular relevance to consumers and the CAP supports its inclusion.
The work group did look at instruments that measure side effects, but they didn't get at
what the work group wanted them to. Jean said the group realized that the side effect
measure won't yield information that can be used to make strong statements, and all that
might come from it is the percentage of participants who reported having a particular side
effect. Pat Corrigan suggested that we use the pilot as an opportunity to validate this
scale. Tom Summerfelt said inclusion of this is important and represents a compromise
between those who wanted to measure symptoms and those who didn't. It would not hurt to
look at these questions during the pilot and perhaps add a drug attitudes survey. Steve
said in this case, the accuracy of measuring side effects is not the issue, but using the
scale to figure out the confounding and addressing a question of concern to consumers is
important. Sally Clay suggested that a political issue has emerged regarding who we are
trying to reach with this research. Jean Risman said that one group we want to reach is
the consumers and that perhaps this view is broader than the federal view of who study
results will be read by. Betsy said that dissemination of the study results to consumers
was part of the federal plan, but that the information has to be credible. The
recommendation was tabled to allow the work group time to (1) review other existing
scales, (2) develop an implementation plan for the side effects measure (what kinds of
things the pilot should look for, how should the pilot be conducted), (3) provide input to
R.O.W. on the logic model, and (4) consider Betsy's recommendation that untested scales be
done by all the study sites in their site-specific protocol.
The Coordinating Center will alter the logic model as we alter the common protocol to
diagram the relationships and record reasons why we did certain things. The work group
will need to report back to the Steering Committee at its July 9 teleconference.
Disability Questions Matt explained that during the last teleconference a motion to
reinclude disability questions 5-8 was tabled so that the Louis Harris poll could be
reviewed to see if there were additional questions or a better way to ask questions. The
Harris questions were reviewed and weren't any better than those that were initially in
the common protocol. Matt moved to reinclude questions 5-8. A lengthy discussion ensued,
and the motion was again tabled. In the meantime, Steve will compile a list of 5 to 10
disabilities (including those that may be invisible) that are common among COSP
participants. He asked that the study sites e-mail him lists of the disabilities that are
common at their sites. He will formulate a recommendation for the next Steering Committee
teleconference. Some of the invisible disabilities mentioned were asthma, arthritis,
diabetes, and pulmonary disease. Reasons that disability questions need to be included
were (1) we need to have the information as a background variable to describe the
population being served by COSPs, (2) it will help the sites better tailor their programs
to participants' needs, and (3) we can determine how large the population is with
disabilities in the study sites.
Discrimination/Cultural Competency Questions Jaime Delgado explained that the
discrimination question that was voted out of the common protocol had originated with the
CAP. He suggested that we take what we learned from the study site rough pilots and revise
the questions instead of eliminating them. Inclusion of these questions is one of the
things that makes this study different and it is important to capture this information.
There are a lot of different perspectives on mental health issues. Louetta Hix pointed out
that during Tennessee's pilot, one participant indicated that discrimination had occurred
because of insurance. There were no objections to Jaime redesigning the questions and
submitting a recommendation during the next Steering Committee teleconference. Jean
Campbell said the Coordinating Center would sent the results of the pilots to Jaime so he
could share them with Vetta Thompson, a consultant who has worked with the Cultural
Competency & Diversity Task Force. It was suggested that anyone working on
recommendations for the common protocol post them on the list serv the day before the
Steering Committee teleconference. Common Protocol Time Line
Jean Campbell said that the time line is out of skew, but that this isn't a criticism
of the work that has been done. The Steering Committee needs to work on a revised time
line. She will work on a revision with R.O.W. and have it ready for review next week. Greg
Teague asked that a generous amount of time be given for resolution of the current issues
on the table. Jean mentioned that sites can move on other activities while waiting on
approval of the final protocol. For example, at the Coordinating Center, the data
repository is being worked in this interim. Common Protocol Piloting Jean Campbell
announced that California will participate in the piloting of the common protocol. She
asked each site to submit a progress report so that the Coordinating Center will know if
they will participate in the pilot and when they expect IRB approval or exemption. Sites
that cannot participate also need to send a progress report with the reasons that they
cannot participate. Expectations of the pilot need to be discussed. About 100 participants
will need to be interviewed during the pilot. The Coordinating Center will conduct 30
interviews. Next Teleconference
The next teleconference will be July 9 at 2 p.m. Eastern Time.
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