• Capitated Care. Five of the projects share, as a central theme, the study of the health care provided to individuals with HIV disease under models where the health care is capitated, or paid on a "flat fee" basis per patient per month.
• Community-Based Organization Models. Six of the projects share, as a central theme, the goal of providing high-quality care for individuals with HIV who belong to groups that are traditionally underserved because of linguistic, cultural, racial, and economic barriers that prevent their full integration into the traditional hospital-based service system.
• Comprehensive Healthcare. Three projects are developing specialized medical care models within the context of a continuum of services in a medical clinic.
• Infrastructure-Advocacy. Seven projects in the Infrastructure-Advocacy group aim to increase the capacity of local health and social support service systems to provide appropriate, quality services for individuals with HIV. The projects in this group are using service system development methods through training and technical assistance to change the service provider infrastructure, as well as the community context in which services are delivered.
• Training. While training is integral to almost all SPNS projects, six have identified training among their most key elements.

Steering Committee Achievements

• Development of Common Objectives. During the course of the four first-year Steering Committee meetings, individual Work Groups met at least six hours at each meeting. During the course of these meetings, discussions revolved around a number of themes. While the themes differed slightly among the Work Groups, a number of common objectives were developed in each group.
• Sharing Project Expertise, Methods, and Resources. A significant part of the work of the Steering Committee was to ensure that there were mechanisms for sharing project expertise, methods, and resources. The Steering Committee employed a number of techniques for improving communication, engaging in project cross-training, sharing costs of developing common evaluation methods, and exchanging information needed by several projects.
• Development of Common Evaluation Methods and Protocols. The Steering Committee adopted a modular evaluation design wherein standardized short forms of 1-2 pages are developed for a number of different functional evaluation questions. By using common modules across projects, as much comparable data as possible may be obtained. Evaluation modules are described in Appendix II.
• Development of a Governance Structure For Making Major Committee Decisions. Significant work was undertaken during the first project year to develop organizational and governance structures for the cooperative agreement projects. The resulting organizational structure is described in Chapter 1 and in Figure 1-1.
• Evaluation Conference to Share Expertise and Perspectives. An Evaluation Conference covering one-and-a-half days was held at the September meeting of the Cooperative Agreement Steering Committee in Arlington, Virginia. The Evaluation Conference was designed to aid projects in designing and conducting their evaluations. The Program for the Evaluation Conference and a summary of the conference is included as Appendix IV to this report.

Individual project goals and objectives for the second year are given in Chapter 3. During the first year, the Steering Committee identified three large scale objectives for the second year of its collective efforts. These objectives for the second year are:

• to evaluate a set of common objectives among relatively comparable projects and to collect a common data set in order to evaluate those common objectives;
• to share expertise among projects; and
• to report and disseminate the successes and experiences of the projects.

Specific exemplars of these second year plans are given in Chapter 3.

Clusters of Projects Funded

For the purposes of managing the cooperative agreements, sharing project expertise, and permitting cross-cutting evaluations, projects initially were assigned to one of five clusters of projects. Projects were clustered based on similarities in methods, outcomes, and/or processes. During the course of the first year, projects could realign themselves. The five groups of cooperative agreements are as follows.

• Capitated Care. Five of the projects share, as a central theme, the study of the health care provided to individuals with HIV disease under models where the health care is capitated, or paid on a "flat fee" basis per patient per month. The Capitated Care projects differ in the ways that they provide health care, ranging from a community-based clinic (East Boston Neighborhood Health Center) to a large "chain" of community-based clinics (AIDS Healthcare Foundation) to a home-based hospice (Visiting Nurse Association of Los Angeles) to university-based clinics (Johns Hopkins University School of Medicine) to a state wide system (New York State Department of Health/Health Research). Each of the projects shares the goals of determining costs for providing health care services to AIDS patients under a capitated care system and of ensuring that high quality care is provided under such a system. As a group, the models and their implementation are quite different from one another; taken collectively, the experiences should serve to define those instances in which a capitated care system for the provision of AIDS-related services is appropriate and those conditions in which it is not.

• Community-Based Organization (CBO) Models. Six projects share, as a central theme, the goal of providing high quality care for individuals with HIV who belong to groups that are traditionally underserved because of linguistic, cultural, racial, and economic barriers that prevent their full integration into the traditional hospital-based service system. Outreach, Inc., has implemented a program wherein substance abusers, many of whom are African-Americans living in public housing projects, are offered a number of social services to link them to the traditional care system. PROTOTYPES has implemented a "Settlement House model" wherein women with HIV come with their children and receive a number of social services as well as linkages to medical services. If appropriate, substance abusers with HIV are enrolled in a residential program. The Well-Being Institute has developed a two tier program wherein substance abusing women with HIV are offered the opportunity to receive social and support services well before such time as they decide to stop using drugs, and are later offered the opportunity to participate in a 60-day drug treatment program combined with housing in a drug-free environment. The Haitian Community AIDS Outreach Project/Center for Community Health, Education, and Research provides case management and other culturally appropriate social services to individuals with HIV in the large Haitian community of greater Boston. The Fortune Society targets Latinos with HIV who are in prison and offers a combination of educational, social support, and legal assistance services both while the client is in prison and after release. Larkin Street Services has developed a comprehensive continuum of services for homeless youth living with HIV in San Francisco which includes psychosocial support, medical care, educational and vocational services, and housing. Common to all of the CBO programs is the development of alternate models of care specifically targeted to individuals who have traditionally been underserved. In all of these models, services are provided by a combination of professional staff and "paraprofessional" or "recovering" staff who share many of the same demographic and experiential characteristics of the target clients.

• Comprehensive Healthcare. Three projects are developing specialized medical care models within the context of a continuum of services in a medical clinic. The University of Vermont & State Agricultural College has developed community clinics throughout Vermont and is determining whether patients receive better, more appropriate, and more consistent care at the satellite clinics than they had been receiving at a single central site located at the state medical center. The University of Nevada School of Medicine has added a nutrition component to its comprehensive AIDS care clinic and is studying the effects of adding nutrition assessment, objective measurements, counseling, and supplements to the treatment of wasting in AIDS patients. Both the University of Vermont & State Agricultural College and the University of Nevada projects are providing services to largely rural patient populations. The Washington University project in St. Louis, Missouri is providing a continuum of care to women with HIV and their children within a traditional medical clinic model combined with aggressive community outreach and case management. The Washington University project serves a group of inner city women, most of whom are African-American.

• Infrastructure-Advocacy. Projects in the Infrastructure-Advocacy group aim to increase the capacity of local health and social support service systems to provide appropriate, quality services for individuals with HIV. The projects in this group are using methods of service systems development through training and technical assistance to change the service provider infrastructure as well as the community context in which these services are delivered. The Center for Women Policy Studies, through the MetroDC Collaborative for Women with HIV/AIDS (with PROTOTYPES), is increasing the ability of service providers in the metropolitan District of Columbia area to provide services to women with HIV through leadership development with HIV-positive women, policy change, needs assessment, and appropriately targeted training. The Michigan Protection and Advocacy Service is providing training to consumers and service providers on the legal rights of individuals with HIV in a number of areas including employment, housing, benefits, and medical services. The Indiana Community AIDS Action Network provides legal assistance to individual clients to redress discriminatory practices by health care providers, employers and others. In addition, this project provides training in legal rights, advocacy skills building, grassroots organizing and public policy advocacy. The Hektoen Institute for Medical Research at the Cook County Hospital's HIV Primary Care Center/Women and Children HIV Program is increasing the ability of the service infrastructure to provide early identification and linkage into care of women with HIV by training maternal and child health providers on how to provide HIV education counseling and testing by consent. This project is also educating providers on the use of zidovudine to reduce perinatal transmission of HIV. The State University of New York – Health Science Center at Brooklyn is developing systems to support and encourage women to be tested for HIV, especially during pregnancy, and if positive, route them to appropriate medical services, including strategies to reduce perinatal transmission as well as on going HIV primary and gynecologic care. The University of Texas Health Science Center at San Antonio is developing a model wherein local service agencies and consumers learn strategies for developing comprehensive models of care for women with HIV and their children. The model is a combination of infrastructure development and training. The Missouri Department of Health is systematically developing the capacity of its AIDS service providers to provide services for individuals with HIV with mental illness (and possibly substance abuse) as well as increasing the capacity of its mental health agencies to treat individuals with HIV. Training and agency development strategies are employed.

• Training. While training is integral to almost all of these projects, six have identified training among their most key elements. These projects include the following. The University of Mississippi Medical Center is developing a training program for physicians, dentists, and nurses in rural and urban settings throughout Mississippi. The training programs have been designed so that medical workers in rural settings who are not comfortable treating patients with AIDS will have increased knowledge and the ability to provide appropriate care. The University of Colorado Health Sciences Center has developed an eight state program to compare different ways of providing medical information to health care providers. The Interamerican College of Physicians and Surgeons has developed a culturally appropriate training program for Hispanic physicians so that they can be trained in the management of patients with HIV disease. A key element of this program is a series of office visits to the physician by another Hispanic physician who has been trained in the management of AIDS. The University of Washington has developed a training program in neuropsychiatric illness associated with HIV disease with an emphasis on delirium, and ways of developing greater expertise among practitioners. Emory University has instituted a training program for health care providers who provide HIV-related medical services to inmates in the Georgia State prison system. Health Initiatives for Youth has developed a training center for health care, social service, and other service providers to enable them to provide services in an appropriate and sensitive way to youth and adolescents.

Related Information:

Evaluation and Dissemination Center: Innovative Models of HIV/AIDS Care 1994-2001