Participants

Richard Beaulaurier   Crystal Blyler   Jean Campbell  Sally Clay  Patrick Corrigan  Dianne Cote J aime Delgado  Susan Essock  Stephen Fischer  Matt Johnsen  David Lambert

Sarah Lickey  Carol Mussey  Jo-Anne O'Connor  Ruth Ralph  Sally Rogers  Mark Salzer  Bonnie Schell  Carole Silverman  Jean Stofer  Tom Summerfelt  Daphne Walker-Thoth

Discussion of Consensus Process & SC Voting Procedures

Jean Campbell reviewed Steering Committee (SC) decision-making procedures and provided background information. At first SC face-to-face meeting, members had a choice of adopting one of two consensus building processes. One process allowed members to disagree, but not to block a decision once it is made. The other allowed members to disagree and block. When a block occurred, members would have to continue the discussion until consensus was reached. The SC opted to disagree but not block. If a decision can not be reached, a vote will be taken, and the majority rules. The leadership offered to do its best in following the spirit of Robert's Rules of Order. Jean asked if there were suggestions about the process the SC had adopted in December. No suggestions were offered.

Logistics Subcommittee Group

Sally Rogers reported that the group met yesterday during a teleconference about data collection waves. A statistician from Sally's center (Joe Methorow) and Carole Siegel, Coordinating Center consultant, participated. They both suggested that it is best to have common data collection points. Prior to the call, four proposals were on the table-0,6,12 months; 0,4,8,12 months; 0,4,12 months; and variable time points.

During the teleconference, it was decided that the 0,4,8,12 months scenario appeared to be the best, however it still poses major problems for Pennsylvania and California. Any assessment beyond six months is problematic for California. Mark Salzer said Pennsylvania will go with the consensus and try to be flexible. Iowa also has a problem because it didn't plan this many assessments. Maine has to go back to its Consumer Advisory Panel for input. Betsy will call Pennsylvania and California to explore remedies. Sally indicated that there may not be remedies, and ultimately there may be one or two sites that don't fit into this schedule. Matt Johnsen pointed out that the issue is whether or not we can pull across all eight study sites in the final analysis.

Sally stated that the Logistics Subcommittee group wants to bring this to closure, but that it needs to revisit it once more prior to making a final recommendation. Steve Segal has been out of the country and the group would like his input.

Jean Campbell suggested that the protocol be looked at to see what outcomes we can expect at what time. Not all outcomes will be realized in the short term. There is not enough literature on this for us to be able to remove things from the CP and then add them at follow up. She also mentioned that for those sites worried about the financial implications of a 12-month assessment, there may be some carryover available.

The next Logistics teleconference will focus on withdrawal, cross over, and whether we should do screening and promotion of self-selection, and how to retain participants. Each study site has been asked to complete a flow chart. Other topics for discussion are service utilization of COS to see if participants received service moderately, intensively, or not at all. The Logistics group also needs to identify tracking or status values to add to the common protocol and procedures for random assignment. David Lambert mentioned that Brian Yates is concerned that we may not have a long enough follow up to capture costs. Brian will be involved in next Logistics call. Sally indicated that a fair number of sites will continue to collect data past the 12-month point. Some sites also discussed doing mini-assessment that would include cost and service utilization.

Substance Use

Tom Summerfelt presented a proposal for the substance use portion of the common protocol that was modeled after the ASI assessment being used by California. The first two pages are standardized, but a few questions that California added for their own use were deleted. Tom moved that the first two pages be accepted as is. The two pages would replace the previous demographic questions on substance use in the protocol. They will be placed in the health section. Ruth seconded the motion. Sally pointed out that Boston had major problems with the reliability of ASI - underreporting and recall were problems. She suggested asking about past use instead of present use and adding a couple of questions about lifetime use. It was suggested that some interviewer introduction be added to this section to remind people that the information is confidential. Matt, Tom, and Jean will work on this and post something on the list serv for discussion next week. The motion passed with 12 votes in favor and two abstentions (Connecticut and Florida).

Tom then moved to adopt the following six additional items:

When use is endorsed, ask... When are you most likely to use alcohol or drugs? With who are you most likely to use alcohol or drugs? I use alcohol or drugs to help me sleep. I use alcohol or drugs to help relax. I use alcohol or drugs to have a good time. I use alcohol or drugs to help me cope because they work better than my psychiatric meds.

The motion was seconded by Jean Risman and Ruth Ralph. Mark stated that Philadelphia is adding a person and places segment and is not interested in these additional questions. The motion failed with 15 votes against it.

Victimization/Sexual & Physical Abuse Questions

Several members were not able to open the documents that Ruth sent out. Ruth moved that an ad hoc group review prospective instruments in a teleconference and then present a recommendation May 25. Dianne seconded the motion, and it passed without objections. Ruth will chair the teleconference and post information on the Research and CAP list servs. Jean Campbell asked for a list of the people who participate on this ad hoc group to be forwarded to the Coordinating Center.

Ad Hoc Symptoms Teleconference

Jean Campbell reported that during the May 12 SC teleconference on symptoms, a motion passed unanimously with 17 votes to "adopt a practice of having as strong of a measure of self-report on symptoms as possible in the common protocol, and that some study sites include interviewer-rated instruments to measure symptoms for concurrent validation." The Coordinating Center agreed to work proactively to identify and form a cluster of those sites using interviewer-rated instruments. Joe Rogers will chair a symptoms task force to identify an appropriate self-report instrument for the common protocol. The task force will have a teleconference Wednesday, May 19 at 1 p.m. ET. Tom added that the task force was asked to identify one or a battery of measures that did not exceed 15 minutes, and that Crystal was chosen as co-chair of the task force.

Spirituality Questions

Although a vote was taken on the spirituality/religion questions for the common protocol during the last teleconference, there was still some question about CAP's recommendation. Sally Clay moved that the following question be added to the spirituality/religion section of the common protocol: "Have you received validation or support for spiritual beliefs or experiences." This is a recommendation from the CAP. It was stated that words like "validation" were hard words. Members supported the idea of adding the questions, but felt that some work on the wording was needed. Bonnie Schell and Carol Silverman volunteered to work on the wording. After some additional discussion, it was decided that religion/spirituality might be a cluster theme for interested sites. Sally withdrew the recommendation, however, Bonnie, Carol and others who are interested will continue to work on the wording so that the question can be adopted as a cluster item. Sita Diehl's proposed question: "Is there an overall theory that gives meaning to your life?" was forwarded to the Qualitative Research Subcommittee Group because it was open-ended.

Discrimination Question

Jaime said the discrimination question had been re-worded and asked if it would suffice. He was given the okay with the addition of "age" as a category.

Addressing Study Participants

Susan Essock suggested that study participants be asked how they refer to themselves (consumer, survivor, recipient of mental health services, etc.) prior to the beginning of the interview questioning and that that descriptor be used throughout the interview. A discussion will take place on the Research and CAP list servs and Jean will add it to the agenda for the next SC teleconference.

Review of Health Question

Sally Rogers reported for Brian McCorkle. One of the questions in the health section over which there was some controversy was "Have you ever had trouble getting physical health care because you were a mental health consumer?" Sally moved that Brian's alternate wording be accepted - "Has your mental health diagnosis prevented you from getting the physical health care that you needed?" The motion was seconded by Bonnie. It was suggested that this question be clustered with social inclusion questions. There was consensus on asking the question, but the question's format needs to be reworked. Perhaps the question should be a scale. It was suggested that the question with and without the scale be posted on the list serv for feedback and that a vote be taken during the next teleconference. There were several proposed revisions for question #15 - "Have you ever received outpatient mental health services?" that have never been voted on. This will be put on the agenda for next time.

Outstanding Items for Common Protocol

Jean asked for a list of all issues related to the common protocol that have to be considered excluding symptoms and physical/sexual abuse. During the May 25 teleconference, the SC will consider all outstanding questions. Members identified the following items:

1. Qualitative questions 2. Repetition of scales - redundancy 3. Assess length of CP - Discuss what "too long" means 4. Hope scale - light at end of tunnel 5. Formatting of the CP 6. Hospitalization - possibly asking about number of lifetime hospitalizations at baseline. The Coordinating Center will review face-to-face SC notes to see what was decided. 7. Residence - asking about the city or county of residence

Next Steps for Common Protocol

The following were identified as next steps:

1. Writing interviewer instructions 2. Attending to consistency in formatting and resolution of the recall issue - perhaps recall should be 4 months to match the data collection waves 3. Deciding on whether to use "we" or "I" during the interviews 4. Identifying which areas need response sheets or cards 5. Developing process by which sites will add individual questions

Another step was for the Coordinating Center to pre-pilot the common protocol. Tom Summerfelt suggested that we pilot the protocol at the sites and do validity checks through the local Consumer Advisory Panels at the same time that the Coordinating Center pre-pilots. The Coordinating Center's pilot may not reflect the whole range of people who will participate in the study. Jean suggested that a full discussion take place on this idea and that a list of sites interested in doing a pilot of this sort be generated. A discussion will be started on the list serv.

Observation from Jean & Request from R.O.W.

Jean Campbell pointed out that some issues that have come to SC haven't been thought through. This eats up our time.

Matt said that it would behoove us to have an updated protocol in front of us during the teleconferences. He asked that those questions or scales that will be proposed be sent to R.O.W. by May 20 so that an updated version can be sent out prior to the next teleconference.

Missouri Institute of Mental Health5400 Arsenal StreetSt. Louis, Missouri 63139
Phone: 314-877-6457 Fax: 314-877-6477