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December 11, 1998 Steering Committee Meeting Notes Consumer-Operated Services
The group agreed to the following rules for communication at meetings:
Discussion of Cross-Site Research Issues Dr. Johnsen stated that questions were raised such as: In what time period should we work to develop common protocol? How long should the common protocol be? Development of a common protocol can take from 6 months to a year. If the group sets a goal of working together very hard over the next six months, the protocol can be completed. In regard to the length of the common protocol, the group needs to decide what the domains that should be addressed and agree on how to measure those. We need to separate design enhancements from questions in the instrument. The design is linked to the cost and the budgets presented. If there are issues related to cross-site study, those ought to be treated as design enhancements, and financial considerations from the Coordinating Center should be explored. We need to start identifying the core of what we want to do. It was suggested that we begin with the outcome domains that were listed in the GFA. If changes in design are needed at each site that affect the budget, the funding should come from the Coordinating Center. If work has to be done on the common protocol and site timelines have to be moved back, how should this be addressed? Mr. McKinnon said sites need to show what it is that they do. For example, what is meant by peer support, empowerment, housing, and recovery. Until services are defined, it will be hard to move ahead. Dr. Ralph pointed out there are some things projects can do while development of the common protocol is underway. Sites need to define programs in more detailed way – Maine will do this through focus groups and other means. We need to better describe programs so that we know what we are trying to measure. This can be a pre-protocol task. Mr. Neal Brown stated that common protocol for the multi-site component is paramount over any of the individual studies. The purpose of the Steering Committee is to agree on common protocol (questionnaire and outcomes). In addition, you will be able to collect other data that you think is important in your community. The budget situation over next two or three years doesn’t look like it will change. Someone suggested that we need to develop common definitions before coming up with common protocol. Dr. Campbell stated that we have choices – do we use current existing questionnaires or do we invent new ones? Some of the existing ones were developed without input from consumers. Someone else suggested that the subcommittee needs to get a sense of the scope of the task at hand. In addition to outcomes, will we need to look at eligibility and other issues such as follow-up intervals? There is some literature that says you don’t have to coordinate follow-up collection points because of statistical analyses today. Common time periods are not required by different sites. Dr. Yates said there are clear cycles for the cost data. We need to figure out how to assess the financial portion. Connecticut suggested trying to keep the common protocol as trim as we can to leave room for individual site needs. A lot of things need to be developed and will have to be done so simultaneously. California suggested that both researchers and program staff have time demands. We need to work backwards and determine when it is we need to be in the field and develop a timeline from there. The following are the months in which each site's baseline data is due:
March is the most common time frame. The common protocol will be done by March. Dr. Ralph said her vision is that the common protocol will involve no longer than 1/2 hour of questions during an interview. There might be one set of questions for drop in centers, for peer support, etc. Ms. Bluebird asked the group not to forget about common sense questions. Don't forget about the cost questions consumers need to be asked. The staff will also be asked questions. Dr. Johnsen said certain kinds of demographic information will be needed. Mike English stated that the group needs to talk about research questions. Your outcome expectations might be different. Be careful to articulate research questions before selecting outcomes and data you want to collect. Consumer Bill of Rights - Carol Schauer, CMHS Ms. Schauer explained that the proposed Consumer Bill of Rights has eight elements: (1) information disclosure for consumers to receive accurate easily understandable information, (2) choice of providers and plans, (3) access to emergency services (right to access services when and where need arises), (4) participation in treatment decisions –have right and responsibility to participate, (5) respect and non-discrimination, (6) confidentiality of health information, (7) complaints and appeals procedures in place so that there is a way to resolve differences, and (8) consumer responsibilities to maintain healthy habits, etc. SAMHSA has a cross agency work group that is informing grantees that the Bill of Rights exists. At this point it is only a recommendation until Congress addresses it. SAMHSA wants feedback on the recommendations of rights – for mental health and substance abuse clients the recommendations might need some adjustments. Ms. Schauer agreed to meet with interested individuals during lunch to discuss the document. Steering Committee - Discussion of Structure and Proposed Operating Procedures Not every person at the conference is part of the Steering Committee. Not every person gets a vote. The committee will attempt to reach consensus but will vote on matters such as the common protocol. There are three subcommittees specified in the GFA. There is some concern that the consumer advisory panel should meet with multi-site research committee. There will not be 6 meetings the first year. Each site has two votes - one for the principal investigator and one for the consumer. The Coordinating Center needs a list of all principal investigators and voting consumers. Dr. Campbell said the group needs to decide if it wants proxies. It was stressed that principal investigators and voting consumers need to be present at all meetings. The question was raised about if the GFA requires that the consumer panels consist of actual consumers who are recipients of services instead of professionals who are consumers. The consumer advisory panel at each site selects a representative to be member of the national consumer advisory panel. Mr. Brown indicated that CMHS wanted committees at the project level made up of recipients of COS. It is to the Steering Committee to address the issue of representation at the national level. Someone suggested that each local advisory panel select a representative to the national consumer advisory panel and the representative could be a current consumer who is receiving services or a professional who is a consumer. Ms. Bluebird suggested that we not spend the whole day in meetings processing what has already been set out by the planning committee. There needs to be some tight planning – and the plans don’t need to be sent out to 50 people for suggestions. The co-chairs and Dr. Campbell should develop the operating framework and structure along with the government project officer. There should be no more than 3 to 5 people working on recommendations for procedures. Announcements/Adjournment It was announced that Dr. Yates has a book on how analyze costs. The group was adjourned so that the three subcommittees could meet. The subcommittees are Multi-site Research, Cost Study, and Consumer Advisory Panel. December 9, 1998 Meeting Notes (December 10, 1998) |
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