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December 10, 1998 Steering Committee Meeting Notes
Steering Committee Meeting Minutes December 10, 1998 8:30 a.m. – 5:00 p.m. Embassy Suites 1250 22nd Street Washington, D.C. 20037 Continuation of Overview Presentations By Grantees The Maine Site Muskie School of Public Services, USM: The Portland Coalition (Maine) The University wanted to bring consumer research into its program. The grant represents a collaborative effort. Randomization is called random invitation because the group decided it wanted choice to be common. Case managers introduce the project to clients and get their permission for the research representative to talk with them. The researchers get permission from the client for their participation. This group will be randomized for participation. Someone who was not invited to participate in the group may come in. This site will study two additional groups to those listed in the GFA. There are some people who go to the Portland Coalition and some people who have self-referred from case management to the coalition—these groups will be studied for long-term effect. There will be qualitative evaluation on an annual basis. Services will be described in a qualitative manner through a series of dialogues and interviews of case managers, consumers, and program managers. We want to document changes in the mental health system in Maine since the system is so fluid. A video camera will be used to help document the entire project. The community partners are two agencies in Portland that provide case management – Shalom House and Catholic Charities Support and Recovery Services. The grant’s advisory group is made up of members of the Portland Coalition, members of Shalom House, Catholic Charities Support and Recovery, and other interested community leaders. The advisory group should consist of a majority of consumers with minority representation form the chronically normal. The advisory group serves as a liaison between the research project and the community. To keep the community informed, the advisory group will provide information. It will also bring back information from the community to the research project. Comments from the state of Maine’s community will be solicited. Portland is a small city of 60,000, but it is the biggest city in Maine. The Portland Coalition was incorporated in 1983. It has a reputation for being on the radical end of service delivery and it does not want to give up its reputation. Its drop-in centers are open five days a week. The grant will allow them to be open six days, including Saturdays. The center provides telephones, newspapers, computers, women’s groups, and coffee. The Coalition recently entered into an arrangement whereby an intensive case manager will be on site 10 hours a week to conduct outreach in the center. The lack of transportation is a major issue. Clients get picked up so they can pick up their checks, go to the bank, go to the grocery store, etc. The Coalition will institute a library, training, and consulting. It wants to create a repository of expert consumer providers rather than having the state pick consumers it feels it can work best with on projects. It is building the framework of a movement that is cohesive. One of the outcomes of the collaboration in Maine was a publication entitled "In Their Own Words." The grantee will do a qualitative description of services because it is not sure what services people use at the drop-in center and which services they find valuable. The groups to be studied as part of the grant include those who only use self-help, those already receiving self-help and case management. The third group is those in self-help who will receive case management services (this is the experimental group). The Illinois Site University of Chicago Center for Psychiatric Rehabilitation; GROW of Illinois The University built a relationship with GROW. A stakeholders’ council was established. There are four groups supporting the grant: (1) GROW, (2) a separate consumer council, (3) community support program in three communities and (4) the University. These four groups designed qualitative questions – What does GROW perceive success to be? What significant changes are expected? What are the significant parts of GROW? What matters the most? The grantee will randomly assign people to GROW or to community support programs for two years. People will be allowed to change. We want to see if people who drop out benefit from the services. GROW is about 42 years old. In its early days, GROW was a voluntary association of people who knew maladjusted or ill adjusted individuals and wanted to help one another grow. GROW members found one another in Alcoholics Anonymous (AA) groups. They were in these groups because there were not other support groups then. They found each other and began to meet weekly in Sydney, Australia. They talked about wanting to recover and they had the hope, vision, and desire to recover—they did not want to be mentally ill forever. They began writing the 12 stages of decline and 12 steps of personal growth. The first step is to admit something is wrong in life. It is not like AA. Membership meetings are held monthly. Groups meet weekly about 2½ hours. The group method is used based on mutual help. If you need help, let others help you and you help others. It is not totally self-help—it is self-activation through mutual help. Self-activation with self-help and mutual help is the key. It is a caring and sharing community. GROW is a network of friendship. Friendship is the key to good mental health. GROW is non-denominational, but it is spiritual vertically —a person’s belief in God and horizontally – a profound belief in one another. In addition to the weekly meeting, there are several coordinated services. GROW is in six countries and has over 700 groups. There are 45 GROW meetings in four states in the United States. There are GROW prison youth groups. GROW is in hospitals, in the community, in nursing homes, etc. There are GROW socials. Organizers and recorders from each GROW group attend bi-monthly meetings to talk about group development and problems. There is a program team for GROW which represents the key team in GROW. It is not a board, but a guiding light that sets policy. There are local, regional, and international teams. GROW continues to evolve. Illinois has the largest development. In 1988 the first residential program was developed—a three-bed facility that now has 8 beds that was funded the Department of Mental Health. The residential program was accredited because of the impact it had on the lives of clients. In the mid 1980s an extensive four-year research project to evaluate GROW was funded by MIMH was awarded to the University of Illinois under the directions and completion of Professor Julian Rappoport of the clinical psychology department. We thought it beneficial for this project to hire a research consultant to advise on matters that we had very little professional understanding of regarding the introduction of scientific research. Professor Rappoport was the most likely choice for us and Dr. Pat Corrigan supported us fully in this decision. According to GROW’s research, individuals who stay for 6 months or longer experience more socializing, less brooding, and fewer days spent in hospitals. People do recover and the mental health system needs to provide funding not only for diagnosis and treatment, but for prevention and rehabilitation as well. The GFA allowed the consumer program to expand its services. We didn’t want to exhaust our present program staff resources so we hired three full-time and one half-time field workers to achieve the highest possible results and success within the project. In addition to the field workers for the three sites, one full-time consumer investigator and one project director at .50 FTE will complete the four-year research. The Iowa Site Boston University Center for Psychiatric Rehabilitation; Iowa Mental Health Advocacy & Recovery Partners in the grant are Boston University, Iowa Mental Health Advocacy & Recovery, ResCare of Iowa (traditional provider), and Boston Center for Psychiatric Rehabilitation. The Center for Psychiatric Rehabilitation has been in existence since 1879. The center spun off from the University to do training and technical assistance and has been working in Iowa for several years. ResCare is a private provider serving southeast and central Iowa. The goal of the grant is to study the extent to which use of consumer-operated services affects empowerment, housing, employment, social inclusion, service satisfaction, service use, and costs for users of traditional mental health services. It is also to create partnerships between consumers, providers, and researchers and to disseminate results of the study. The evaluation plan is to recruit consumers from 15 points of entry from ResCare. These consumers will have received mental health services. Consumers will be randomly assigned to continue receiving services from ResCare or to get traditional services and peer support services. A total of 240 consumers will be randomly assigned over the first year. Of that number, 120 will receive peer support plus traditional services, and 120 will receive traditional services only. There is a need to build the capacity of Iowa Mental Health Advocacy & Recovery to deliver peer support services through technical assistance, training, and building the infrastructure. There is a need to recruit and train research staff, develop procedures for recruitment, perform fidelity assessments of two conditions, and assess the collaborative relationship. The outcome measures, which are subject to negotiation, will include empowerment, social inclusion, quality of life, coping, self-efficacy, stress, social support, service utilization, and a variety of descriptors using center-developed instruments. Iowa Coalition The peer support program is new. It serves 79 consumers with a statewide staff of 45. It provides transportation, social support, and it is working on establishing a dual diagnosis group. Ninety percent of clients are dually diagnosed and their needs are not being met. The program helps clients navigate the social security system. It provides individualized, tailored services. Clients let the staff know what they need. Each staff member serves about 10 people. The staff members hold paid volunteer positions. Most referrals are self-referrals. The coalition has a fee for service arrangement with managed care. ResCare ResCare is owned by its employees and is for-profit. Its prime directive is to do good. It supports recovery. Service delivery is a partnership with clients. Its service area is semi-rural; however, it does provide services in central Iowa in the urban areas. Southeast Iowa is not diverse ethnically, and the residents are poor. There is some diversity in central Iowa. ResCare provides services in large residential facilities, in-home support services, psychiatric rehab services, and it operates community mental health centers in two counties. It served approximately 1,600 people last year and also provides developmental disability services. The managed care plan allows consumer service providers to come to the table and receive contracts, and they don’t have to be accredited. The Iowa Coalition will get 1/3 of its budget from managed care. The Pennsylvania Site Mental Health Association of Southeastern Pennsylvania; UP Center for Mental Health Policy Philadelphia had one of the first consumer-operated research grants on consumer case management. In Philadelphia, we will look at programs that grew out of the closing of state hospital. The system underwent a revoluntary period during which people wanted to see new services in the community because of the failure of the community system. People wanted to see a significant share of services that had been provided by the state to be provided by community-run entities. Up to $10 million of services is now provided by community-run programs. Many people were in state hospital because of mental health issues and substance abuse problems. A lot of homelessness was a result of emotional and substance abuse disorders. Friends Connections involves peer and consumer-run efforts in the service delivery system especially for the dually diagnosed. Friends Connections was borne out of the closing of state hospital to help the dually diagnosed in 1989. The program was designed after the Ohio Oasis program, which was one-to-one peer support in the African-American community. Individuals would be matched with a positive role model. Friends Connections provides intensive one-to-one support for dually diagnosed individuals who have gone through rehabilitation or who have not. It works with people teaching them a better way of life that is clean and sober with new places, people, and things. All staff members are recovering and stable in their own mental illness issues. Clients learn leisure skills and are linked to support in the community such as 12-step programs of their choice, Double Trouble for dually diagnosed, or Alcoholics Anonymous. Role models who model sharing and help them begin to establish support networks with other people struggling with the same issues. Friends represents a program without walls. Individuals are worked with in the community. Peer counseling is conducted on the streets as the need arises. People identify their own goals of what they want to achieve. Goals are reviewed every three months. People are helped to develop structure in their lives. It takes 18 months to two years to clear their brains after they stop abusing substances before they can see their way clear to the next level. The intensive one-on-one services two to three times a week is provided initially. Service is decreased to once a week, then to once a month, then to just telephone calls, then to membership in the alumni group. People don’t get kicked out of the program if they use substances. Staff are all paid and trained in crisis intervention, dual diagnosis, psychopharmacology, etc. Staff is matched with clients. A pilot study on the program two years ago revealed that it helped to reduce hospitalization. In regard to the evaluation, after a person comes to Friends, random assignment will be used. The person’s choices will be whether or not to participate in the project. He or she will be assigned to the wait list or to Friends Connections. Friends always has a wait list because there is not enough staff to serve everyone interested. Some service capacity expansion will be included. There will be 75 people assigned to each condition. The evaluation will look at leisure skills and coping skills enhancement. The city office of mental health is supportive of consumer-run services. Friends operates only in the City of Philadelphia. Evaluators will be looking at substance abuse data, shelter data, and Medicaid services data. Johnnie Patterson, president of the alumni and a member of the advisory committee, shared his story about how Friends Connections helped him. He recited a poem that he wrote. The Tennessee Site Vanderbilt University Medical Center; BRIDGES (Tennessee) Tennessee just finished its study initiation kick-off meeting with 25 stakeholders from around the state. The grantee is striving to not alter BRIDGES through the research and to adhere to the values of consumer choice and mutual respect. The goal of the grant is to conduct a process evaluation of BRIDGES and a traditional mental health program and to construct a program fidelity measure for BRIDGES and traditional mental health services. The grantee wants to examine the impact of BRIDGES on consumer outcomes (empowerment, housing, social inclusion, etc.). BRIDGES has a psychoeducational component and cognitive ability and medication will be looked at as part of the process. Focus groups were held in 10 communities in Tennessee. From the focus groups, the program components were written. There were three pilot sites. The program consists of two components: (1) a 15-week course on dual recovery and (2) an ongoing support group. Teams of three consumers who are paid a stipend teach the course. The course is in collaboration with another project. There are three components to the course including (1) the concept of recovery, (2) technical information on mental illness along with best practices and treatments so consumers are knowledgeable about these and can approach providers, and (3) self-help skills. There is also talk about advocacy. There were 46 concurrent classes held in Tennessee last year. There are over 100 teachers. The program has gone to 8 states and Vancouver, Canada. Funding came from CMHS initially and partially from the state Department of Mental Health and private foundations. The philosophical premise is that by learning about mental illness and facing it, people can put symptoms in the background and work to improve social environments. The program builds on the concepts of empowerment and recovery. It also has a psychoeducation component. The grant will allow for a longitudinal study using random assignment or random referral. The process evaluation has already started and outcome evaluation with consumer interviews and program monitoring will be implemented. Key informant interviews, focus groups, observation of service delivery, and program document review will be used. There will be two conditions with two cohorts — people who start BRIDGES in the spring and people who start in the fall. The cohorts will be interviewed for an 18-month interval. Record reviews will also be conducted as well as interviews with line staff. The methodology will be ethnography and measuring program implementation or fidelity. Within BRIDGES domains and research questions will be identified, a description of the BRIDGES community and culture will be developed, there will be an observation of a BRIDGES teaching team and facilitator team, and there will be a written account explaining the experiences of teachers, facilitators, and participants. Program fidelity will consist of comparing programs to their philosophical ideals. The same agency will be compared by time and by provider. This will allow for the comparison of traditional mental health services in rural and urban areas. There will be a consumer advisory panel. The grantee wants to maintain a high level of consumer involvement in all phases of the program. Consumers will serve as interviewers as well as on the advisory panel. Efforts have been made to gather a diverse advisory panel. The tasks of the panel will be to review all protocols, advise on confidentiality, advise on reasonability of process for interviewers and respondents, review procedures for unanticipated effects, advise regarding interviewer support, review reports and aide in interpretation. All reports will be presented to the panel prior to release. There will be an interviewer support team that meets weekly to help interviewers avoid burnout. At this point, Tennessee has completed its initiation activities, the process evaluation has begun, the ethnography study is underway, and analysis of internal evaluation data is completed. An important part of the evaluation and research is giving back. This will include an analysis of existing data that will result in suggestions for future efforts, the development of a database, training in using the data entry system. They will be able to generate their own reports so that they know how to fish instead of being provided with fish. Overview of Coordinating Center Dr. Jean Campbell, principal investigator of the Coordinating Center, announced that a retrospective report of 13 consumer-run programs funded earlier by CMHS is available in draft form from Bill McKinnon, COS Program Director. Mr. McKinnon stressed that the report is a draft and should not be used for citation. Dr. Campbell also mentioned that GROW’s report that was distributed had only every other page copied. The Coordinating Center will correct the mistake. The Coordinating Center was designed to support the grantees and to help keep the focus. The important work is being done by the grantees. Dr. Campbell encouraged grantees to ask what the Coordinating Center can do for them instead of what they can do for the Coordinating Center. She said the partnership between research and peer support is an important one. Peers learn about research and professionals learn from peers about research. Hope is an important element of what we are going to be evaluating. She indicated that the Well Being Project was the first research project that was conducted by mental health consumers. It enabled consumers to speak for themselves. The current grant will build rigorous research to support that early work of the Well Being Project. We will find out who we serve in peer services, what are the outcomes, and what are the costs. Through this project we will answer some of the questions related to what works for different people. The Coordinating Center will be responsible for knowledge production in a systems approach. It will be involved in the collection, analysis, interpretation, and distribution of data as well as soliciting feedback from the field. Research should and can enhance individual choice, power, and knowledge. Previous subjects of research were dehumanized. Some progress has been made. We need to listen and respect what people want to be called. Call people by their names instead of by labels such as consumer, ex-patient. We want to be an open architect of knowledge. The information that will be generated will be open to the country through a web site. Listserv(s) will be available. We have the opportunity to take quantum leaps forward to where individual and system health decisions can be made in a different, but dramatically more effective and humane way. We can make revoluntary change in the way services are delivered. Structure, Goals, Staff of the Coordinating Center The Steering Committee will attempt to reach agreement by consensus. It will vote on matters when a vote is required. The organizational chart that was developed is only good for this year. The Coordinating Center will establish a mini research institute. People will be contacted to be presenters as part of this institute. Through the National Empowerment Center, most of our technical assistance has been subcontracted. There are some task forces because the committees couldn’t do all of the work required. The three subcommittees required by the GFA will be depicted on the organizational chart. Dr. Campbell introduced staff from the Continuing Education component of the Missouri Institute of Mental Health – John Kretschmann, Thom Pancella, and Kelly Gregory. Mr. Kretschmann suggested that copies of the CD ROM on mental health that was developed by MIMH be sent to each grantee site. Dr. Campbell also introduced Daphne Walker-Thoth who will serve as project director of the Coordinating Center. She will begin work as the project director April 1, 1999. In the meantime, she is completing a project with the Missouri Department of Mental Health and serving as a consultant to the Coordinating Center. Dr. Matthew Hile, Management Information Systems Director Dr. Hile indicated that he outlined some initial thoughts about the data repository in a paper included in the Steering Committee conference manual. His e-mail address is noted on the memo and it is much easier to contact him through e-mail than by other means. He would like to do all data collection electronically over the Internet. There are three things he would like for the Steering Committee to think about (1) what data will be included, (2) the structure for the data repository, and (3) how access can be provided to this information. Each grantee site will develop its own assessment and data entry. What the cross-site data will be will evolve from the planning. There is no money in the budget to develop a cross-site data entry component. A common way will be developed to transit the information. It has not been decided yet if we will develop new protocol that hasn’t been tested or if we will use something that already exists. The Research Committee will make the decision about the parameter around the common protocol. There will be listserv(s) so dialogue can take place around this issue. Vicki Fox-Wieselthier, Communications Director Establishing an infrastructure so that people can communicate with one another is important. Ms. Fox-Wieseltheir said there are people with no peer support in real time who could get peer support over the Internet. She is looking forward to a grant that will explore how to deliver peer support services through the Internet. She wants to make it easy for grantees to communicate and the easiest way was to set up mailing lists. If you can do e-mail, you can do a mailing list. Each grantee site should have its own lists so you can talk with one another. There are sites with multiple sites in the grant. It is up to each grantee at the sites to determine how they want the use the mailing list. A maximum of 250 people can be on a mailing list. The grantee should decide who they want on their mailing list. Ms. Fox-Wieseltheir suggested starting with a closed list and then opening it up to others. A list is a group of people who get one another’s mail – it’s like a party line. There will be about 17 lists. The Coordinating Center will have a list. There will also be an interactive web site. She said that keeping our movement secret has harmed it. She encouraged the Steering Committee to be as open as possible about everything and to put project descriptions on the web site. If there is something a grantee doesn’t want shared, they should let her know. She will be a member of all lists and as soon as the users are comfortable with the list and know how to use it, she will get off the lists. She will serve as the site administrator. We will have the ability to chat live in real time within the web site. We can chat live and work together on a common document – she will teach sites how to use the software for chatting. She will walk sites through software if they have problems using it. The web site is on a consumer-run operated site and will be functional in the next week or so. Ms. Fox-Wieseltheir will do a monthly summary of the lists. There will be a list archives. The listserv(s) can be used for meetings. Sites will need to take responsibility if a person is not using the listserv properly. She can teach sites how to do moderated chats. Jaime Delgado, Cultural Competence and Diversity Task Force Leader Mr. Delgado explained that his role is to provide technical assistance around cultural competency and inclusion. There are some legitimate concerns around research and cultural competency. He is available to visit sites to work on specific efforts. He said perception is one of the first obstacles grantees will have to deal with because there are some perceived concerns. We need to open up space and invite consumers to come in. He can help sites operationalize concepts. Consumers have some insight that must be valued. There is a role for consumers. He said we have a burden. If we fail, the failure will fall back on the community and people will say, "This is why you can’t involve consumers." He has done work in the area of participatory action research. He said we must look at how we use qualitative and quantitative research to qualify what we are doing. Mr. Delgado said he can identify an organization's values by looking at the structure of its meeting agenda. He said we must look at the quality of collaborations and be willing to de-mystify and train. There must be some degree of training and preparation. There are issues of class and gender. All Latinos are not the same, all African-Americans are not the same, and all white people are not the same. We need to look at emerging populations within the United Sates. There are bi-cultural individuals and groups who want to be identified by both of their cultures. Most research is inadequate or incomplete because it is not done in a culturally sensitive way. Mr. Delgado said he will work on any process into which he is invited. Trust is a fundamental part of what we will be doing. His e-mail address is jdelgado@uic.edu. Gayle Bluebird, Pioneer Dialogues Facilitator Ms. Bluebird said we need to be conscious about including people with differences. Pioneer dialogues is a trade name started at a conference in 1991 in Florida. The conference brought consumers in from other parts of the country. Dialogues are vehicles for communications that explore consumer issues. Ms. Bluebird will visit all the program sites and spend time with them talking. The goal of the dialogues is to develop technical assistance to resolve problems once problems are identified. Cross-Site Research Summary – Dr. Matt Johnsen, ROW Sciences, and Dr. Brian Yates Dr. Matt Johnsen Dr. Johnsen introduced the persons involved in the cross-site analysis, summarized the interventions discussed in the various site proposals, discussed the cross-site cost study, and began a discussion about how to join data from the 8 grantees to inform people about the impact of consumer-operated services. ROW is involved in number of multi-site demonstrations including ACCESS, SAMSHA managed care for project, and cross-site evaluations through NIMH. ROW represents the company’s founder’s initials - Ralph O. Williams. The company began as a minority business-- earlier this year it was sold to Federal Data Corporation. There has been attention to minority issues since its inception. Dr. Johnsen is a sociologist who is looking at service delivery networks, satisfaction with managed care, and self-advocacy for developmental disability. Brian Yates will lead the cost analysis task force. He serves as a professor at American University in Washington, D.C. The cost study is integral part of the other analysis – not separate analysis. It will look at the relationship between cost and outcomes.
Among the grantees, there are three primary program models that projects fall into and there are variations among them. Three sites have drop-in centers, 2 sites offer individual mutual support, 2 sites offer advocacy training. Additional program components include mutual support groups at 3 sites, material needs at 2 sites, and case management at 1 site. The services that are called traditional services vary from site to site also. We need to understand variations to interpret results. One of things we will need to do to understand the kinds of services through conversations with the sites. We also need to look at issues around research design and analysis such as group structure, eligibility, numbers, assignment mechanisms, measurement intervals, process evaluation, incentives, attrition, and power. All sites began with traditional versus traditional plus consumer-operated services (COS), but there were differences between sites. In Florida, Pennsylvania, and Maine there was one location, there were multiple traditional sites and one COS in Tennessee, Connecticut, Iowa, and Illinois. Then there were multiple traditional sites and multiple COS programs in California. Sites in Tennessee and Iowa included urban/rural differences in design. The proposed number of study participants ranged from 75 in each condition in Pennsylvania to 336 in each condition in Tennessee. There is random assignment in 6 sites, adaptive randomization in 1 site, and random invitation in 1 site. Several sites discussed the potential for crossover from one group to another. There were different intensities of intervention ranging from several hours to 14 weeks. Some participants are paid to participate in program. The number of follow waves varied from two to six follow-up interviews. There were variations in the timing of follow-up interviews and variations in the period from baseline to final follow-up that ranged from 6 months to 3 years. There were two types of attrition of participants – disenrollment form program and expected loss to follow up. The process evaluation had a wide range of approaches. Dr. Johnsen pointed out the following research related issues to be considered: (1) To what extent will it be possible or advisable to do pooled analyses over all sites? (2) Can we come to some consensus about timing of waves of data collection? (3) Development of common protocol: will all sections of protocol be applicable to all program types? Dr. Brian Yates, ROW Consultant Dr. Yates teaches courses at American University on research methods, psych research 1, theories of personality, health psychology, community psychology and improving human services, and self-management. E-mail works best for communicating with him –BrianYates@email.msn.com He is working as a consultant for ROW Services. He wants to help write the book on how much consumer-operated services cost and how much they save. His role is to help grantees learn how to collect and analyze information on costs (types, amounts, values). Costs don’t always involve money. The study will combine cost information with outcome information. Dr. Yates will help develop a tailored model at each site for understanding cost, procedure, process, and outcome paths. This is a logical model. He will ask each site to contribute to common protocol. There are three objectives from the GFA – what is marginal cost of COS, cost assessment strategies (retrospective versus prospective), cost-savings benefits (cost offset) reduction in hospital stay, ER visits. Marginal costs will involve looking at what is the cost of adding COS to traditional services in dollars, space, resources, etc. How much does amount of participation by different consumers affect costs? We want to identify what other cost savings there are such as police, jail, forensic services, criminal justice costs, income support (SSI not paid), and tax revenue paid. Cost effectiveness and cost benefit are not costs. Are the additional outcomes worth the additional costs when COS are added? Costs consist of a thorough description of the types, amounts, and value of all sources used to provide each service. These include costs to the consumer, to the agencies, to the community (volunteer time), and to the taxpayers. We will need a complete list of costs of the most important resources such as space, personnel time, and transportation. We need to find a way to document the time spent with the families, employers and friends, and look at the relationship between resources used and outcomes produced. The changes inside the person need to be documented. Cost benefits usually involve looking at monetary benefits. Usually monetary benefits occur over many years. A service may be delivered just over a year or two. Cost effectiveness involves looking at non-monetary measures. Dr. Yates mentioned that Sue Poole’s book entitled "Where the Dollars Should Go" represents a different perspective on costs. Question and Answer Session on Cross-Site Dr. Johnsen explained in a multi-site evaluation first there is a lot of discussion about protocol and the boundaries. It could take from 6 to 12 months to develop common protocol. He suggested that the discussion begin December 11. Some sites will begin data collection in the first six months – others won’t begin for 13 months with data collection. There are a lot of relationships that need to be worked out with principal investigators. Dr. Campbell stated that Steering Committee has three committees and three subcommittees. We need to develop meaningful working relationships and need to chart the Steering Committee and principal investigators relationships in analysis. Bill McKinnon said SAMHSA has moved to a three-year grant cycle. He encouraged grantees to move at a common pace. He asked what role other than data collection the sites will play in the cross-site evaluation. The Coordinating Center will develop the cost study so sites won’t have to analyze and configure the data to make sense – this is too much of a burden to place on individual sites and it is stated in the GFA. There needs to be a committee or task force to address issues of authorship and relationships between individual sites and what sites can do with own data as opposed to multi-site data. Dr. Johnsen said we need to look at the interest of the local sites as far as cross-site data and cost effectiveness/cost benefit data. Some sites want information to approach legislators and foundations, health departments, etc. It is possible to do this. The Steering Committee needs to determine if all sites have access to all data, or if each site has access only to its data along the same issues with publication policy. Minor adjustments may be possible at sites that bring us all in line. We may need to set up regular cycle of collecting cost data. It will take several iterations, but if we meet more and communicate more, we can move faster. Fred Newman mentioned that follow-up intervals don’t necessarily have to coincide. Dr. Campbell said the reality of what we have to do is finally hitting people and its overwhelming. She suggested taking one step after another and not letting the tasks overwhelm us so that we become paralyzed. All of us are responsible for answers to the questions. We all have to work to come up with answers. Matt and Brian have the expertise, but don’t have the answers. There is no correct answer out there right now. Connecticut expressed a desire to establish a timeline on data collection before the end of the conference. We may need to pilot test new items if they are developed. We need to list out initial tasks that need to be done and identify what constructs are we going to capture. A lot of work will be done in committees. A question was raised about how subcommittee membership will be determined. Dr. Campbell said the GFA requires 3 subcommittees. Consultants are resources to subcommittees. Committees will have to decide how consumers and researchers will give input into the committees. It was suggested that on the last day of the conference time be set aside to schedule future meetings. There is a lack of clarity about the role of the Steering Committee. Dr. Campbell will review the GFA, which lists the responsibilities of the various committees. The question was raised about whether there are any consumer representatives at large who are not connected with any sites. Dr. Campbell said under the task force there is consumer researcher task force and several other researchers/consumers. The Steering Committee will to come to consensus on major issues and when it can't, a vote will be taken. Dr. Campbell will share the consensus-building tips. Ms. Rogers suggested that ground rules be established in the morning on how we will communicate and raise objections respectfully. December 9, 1998 Meeting
Notes |
Missouri
Institute of Mental Health |
5400
Arsenal Street