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Introduction Health departments rely on input from community partners to develop and implement strategies that reduce the burden of disease and increase the health and wellness of their constituents. Processes for gathering input vary across the country and are highly dependent on the unique circumstances that exist in a given area. Factors, including but not limited to, disease burden, demographics, geography, the absence or presence of certain policies, funding, capacity, and infrastructure all influence the mechanisms and philosophies that guide community input and broader community engagement. HIV/AIDS programs have long been recognized as leaders in their work to engage infected and affected communities, as well as subject-matter experts in HIV prevention and HIV/AIDS care and treatment. Supported by early efforts that promoted parity, inclusion and representation (PIR), health departments have convened both formal and informal groups to seek community guidance on their HIV/AIDS programs for many years. From the outset of the public health response to the domestic HIV/AIDS epidemic, health departments have found value in the principles for community engagement originally laid out in the Denver Principles, which outline the importance of engaging persons living with HIV /AIDS (PLWHA). In their work, HIV/AIDS programs strive to maximize the effectiveness and efficiency of mechanisms for eliciting community input. Reviewing their current strategies, many programs recognize that some existing systems, as well as some of the principles that guide community engagement, fall short of the actual needs in their jurisdictions and too often limit the flexibility necessary to address the unique circumstances they face. While acknowledging that some of the prevailing philosophies and aspects of traditional approaches are still meaningful and relevant, many health departments seek new mechanisms for defining, eliciting and using the collective wisdom of their communities. As the epidemic in the United States has changed over the years, the ways in which health departments organize and deliver activities and services, include community engagement, must also adapt. To support thoughtful integration of new ideas and possibilities into existing systems, health departments are encouraged to reflect on the following considerations.
In this issue of NASTAD's Prevention Bulletin, we will explore different models for community engagement that begin to address some of the concepts raised in the above considerations. The Bulletin first explores models that focus on consumers, in this case, persons living with HIV/AIDS (PLWHA). Next, the Bulletin explores models for eliciting community input that are used in other countries. Health departments may glean new ways to structure their community engagement mechanisms from these examples. Finally, the Bulletin explores an approach that uses a coordinated process to gather input on both HIV prevention and HIV/AIDS care and treatment. Through exploration of the concepts in this Bulletin, we hope that health departments and their community partners will discover new opportunities for identifying optimal mechanisms for community engagement. back to top > Consumer-based Approaches In consumer-based approaches to gathering community input, the assembled group is comprised solely of consumers—people impacted or affected by HIV/AIDS and/or who may participate in HIV/AIDS services. Health department personnel, scientific experts and representatives from community-based providers participate in planning activities and provide input to the community engagement process but do not actively engage in decision-making. back to top > Maine’s Consumer Model In 2004-2005, Maine restructured its HIV prevention community planning process into a consumer-only model. They did so for two reasons. First, the HIV/AIDS epidemiology in the state had been static for the past decade. Second, the previous planning group included several members who were direct service providers who had not cycled off the group for some time, and the consistent participants who were doing the bulk of the work were becoming burned out. In order to reinvigorate planning, and after researching other states’ planning processes, Maine decided to comprise the planning group solely of consumers, along with a health department co-chair, a position required by the Centers for Disease Control and Prevention (CDC), for all directly-funded HIV prevention programs. To compensate for not having providers at the planning table, the planning group’s community co-chair attends quarterly provider meetings, and provider input is a standing agenda item for planning group meetings. Maine’s new structure mandates a 12-15 person all-consumer planning group. To keep expectations clear, the bylaws state that no providers are allowed and that the consumers are expected to be gatekeepers for their communities. The CPG has a two-day retreat in April where the bulk of the work is done to finalize planning activities, including priority populations, interventions and identification of other needs. Because Maine’s group is consumer-based, it is careful about providing enough support to allow them to participate (mileage, food, transportation), without providing too many incentives that might impact their eligibility for publically funded care and treatment services. Maine has reduced the number of meetings from ten to between six and eight, with one retreat convened for decision-making purposes. The community planning group (CPG) always meets centrally in Augusta, and members may join by conference call should an issue arise. A consumer model is inherently more tied to community and mitigates the possible power imbalance that can result when providers and consumers sit together. This results in enhanced community input and a reduction in conflict of interest. To help assure the valuable skills of CPG members are developed and used in this new model, the Executive Committee of the CPG has responsibility for ensuring PIR, and CPG members are matched with technical assistance (TA) providers to co-deliver TA. Recruitment, retention and supporting participation in a very rural state are barriers for a consumer-based model. However, Maine has found creative ways to increase participation, particularly to address health-related concerns. Maine is currently working to streamline its approach. Once membership has stabilized, it plans to broaden consumer and community input through town hall meetings. back to top > Massachusetts’ Consumer Advisory Boards In 2003, the Consumer Office of the Massachusetts Department of Public Health HIV/AIDS Bureau released guidelines for community advisory boards, or CABs, in Massachusetts. The Statewide CAB that provided advice and guidance on the guidelines then changed into a Statewide CAB (SWCAB). Updated guidelines now outline how the SWCAB, agency CABs and Service Coordination Collaboratives (SCC) work, including how consumers are to be involved. Consumers are defined in the CAB system as individuals living with HIV/AIDS or the parent or guardian of an individual under age 21 living with HIV/AIDS. As outlined in the guidelines, “Consumers participate in CABs to have meaningful input into the development of policies and programs that address their needs. CABs seek to support the creation of comprehensive, community based HIV/AIDS prevention, care and support services that are accessible, inclusive, responsive and of high quality.” The SWCAB has a direct relationship with the Massachusetts HIV/AIDS Bureau, and agency CABs have representation on the SWCAB. The SWCAB advises the health department on strategies, policies and programmatic issues impacting consumers and individuals. SWCAB members may visit agency CABs for support and exchange, and the SWCAB has three teams which focus on influence, visibility and communication, with a diffuse leadership across teams. Agency CABs include current or past HIV-positive clients who advise the agency on their programs. The Massachusetts HIV/AIDS Bureau recommends at least a 25 percent of SCC members be consumers. In addition to these duties, CABs may volunteer at provider agencies, participate in community events, support newly diagnosed individuals and educate the larger community about the epidemic. The eleven Service Coordination Collaboratives (SCCs) across Massachusetts include care and support service providers and consumers focused on improving the systems of services for PLWHA. Their chief tasks are community organizing and leadership, under the rubric of four broad goals: 1) improve the referral network of existing resources; 2) assess service system quality; 3) identify and address service gaps; and 4) maximize access to services while minimizing inefficiencies. The SCCs come up with annual work plans with tangible and/or intangible products. They may also engage in advocacy and fundraising (but not on state-funded time). As the guidelines for the SCCs state, “The challenge for community involvement today centers on how to optimize the efficiency and effectiveness of the current service system at a regional level by examining the array of available services, identifying gaps, and determining to what degree referral linkages exist and are coordinated in order to effectively connect consumers to needed programs. The system of Service Coordination Collaboratives (SCC) now being implemented in Massachusetts is part of the natural evolution of community input from resource planning to service system coordination. The SCCs are intended to take local input to a new level and provide local stakeholders with a forum to present and address ideas for improving the HIV/AIDS service system as a whole.” back to top > Global Models of Community Engagement Community Input in the Pacific Because the HIV/AIDS epidemic, infrastructure and resources in the Pacific differ so much from the mainland U.S., the Pacific approach to community input and planning is necessarily different. There, Pacific island health departments and communities engage in the Pacific Island HIV/AIDS Community Action Network (PIHACAN). A guidance for PIHACAN is under development and will clearly describe the process, the components of PIHACAN, its expected outputs, roles and responsibilities of involvement and how planning activities are to take place. This new process was necessary in large part due to specific challenges, including resources, capacity and geography, that impact the ability to conduct more traditional HIV planning models. In the Pacific process, the main tasks of planning are to 1) assess the target communities and elicit feedback and input from these communities; 2) plan HIV prevention activities based on the assessment and community input; 3) implement HIV prevention activities; and 4) monitor and evaluate HIV prevention activities. The main products of planning are a Community Assessment Report and a yearly HIV Activity Plan. PIHACAN is based on the idea that community input is critical to effective HIV prevention programming and that achieving community input is realized by meeting the community where it is and providing it with the ability, capacity and support to provide input. The PIHACAN Core Group meets several times a year to plan events and strategies for reaching people at risk. Because of capacity and cultural barriers, PIHACAN does not actually require community members to attend formal meetings. Instead, the PIHACAN Core Group takes opportunities to learn about community issues and to get answers to questions about community needs and views for HIV prevention services at the events they plan and convene throughout the year. There are no specific membership requirements for community participation in this model, primarily because that requirement in the Pacific cultural context would be counter-productive to ensuring involvement and input of the community. Instead, this process strives to increase community awareness and involvement in HIV prevention and also allows for the community to be part of the implementation of HIV prevention activities. back to top > Ethiopia: Community Conversations In generalized epidemics, wide-reaching HIV prevention strategies must be able to deliver health information and behavior change strategies that reach entire communities. Ethiopia’s epidemic, for example, is too large, and its government’s resources too few to implement HIV prevention interventions that focus only on individual behavior change. Ethiopia must rely on its people to mobilize themselves, to change their own norms and behaviors that promote HIV risk and to draw upon their own local resources to support community members living with the disease. Community Conversations is a national intervention used to bring about these changes. A Community Conversation is an intervention that engages members of a community in a productive dialogue around a particular issue or set of issues. The approach begins by deploying well-trained, local facilitators, who, using transformative tools, explore a community’s concerns, possibilities and opportunities for action and change. Community Conversations contrast with awareness interventions and mass media campaigns because communities define the nature and extent of problems and develop localized courses of action. The process, however, does not end with fostering community ownership and empowerment. These dialogues engage service providers and policy makers on the concerns of communities. Data generated from Community Conversations can alter the prioritization of resources and influence policies at the local, regional and national level. Community Conversations facilitators are recruited from the community and are trained and supported by staff from local government HIV/AIDS prevention and control offices (HAPCOs). NASTAD currently provides capacity building support to national and local HAPCOs for training, retention, monitoring and technical support of Community Conversations facilitators. In March 2009, a NASTAD team visited a Community Conversation held in Dire Dawa, Ethiopia. The meeting was held outdoors, on a construction site. Approximately 50 community members attended the conversation, the majority of whom were women, and over 70 percent of whom were unemployed. Participants explained to NASTAD that the Community Conversations group was of value to them because together they had brought to the local government several concerns that were now being addressed. One of these concerns was to place lighting around the local school, which was seen as a structural intervention to prevent unsafe sexual behaviors of students meeting in the darkened streets during after school hours. The Community Conversations group had also established a micro-finance scheme whereby members each contributed small amounts of money to a central fund that members could borrow from – this too is a structural intervention which protects members from seeking sex work to survive. The Community Conversations group also described how they had raised funds to support one of their HIV-positive members currently receiving care in a Dire Dawa hospital. back to top > Botswana: District Planning In Botswana, District Multi-Sectoral AIDS Committees (DMSACs) are responsible for managing the response to the epidemic in their districts, including the activities of non-governmental organizations (NGOs) and sectors (i.e., the local level government ministries). The Botswana Ministry of Local Government (MLG) hires District AIDS Coordinators (DACs) to administer the district AIDS planning activities and coordinate and oversee the implementation of planned activities. DMSAC membership is outlined in Terms of Reference contained in Botswana’s National Strategic Framework. Members include district representatives of national AIDS programs such as the national antiretroviral therapy (ART) program, Masa, and the HIV counseling and testing program Tebelopele, as well as representatives of the District Health Team and local government sectors (e.g., Agriculture, Transportation, Labor, Education, etc.). The Terms of Reference also encourage representation from traditional healers and people living with HIV/AIDS. DMSACs are standing committees and usually meet monthly. NASTAD has helped build the capacity of the DACs to oversee the creation and implementation of annual comprehensivedistrict HIV/AIDS work plans. A DMSAC Planning Toolkit, created by NASTAD with the MLG,emphasizes an evidence-basedapproach to ensure that eachdistrict’s plan responds specifically tothe unique situation in that district. Using the toolkit, DACs develop a district HIV epidemiologic profile and update a district resource inventory. They share this data with the DMSACs in an annual planning workshop. Lasting two or three days, these workshops engage the DMSAC in small and large group discussions to 1) perform an issue analysis and identify important district concerns; 2) prioritize identified concerns; 3) define objectives or results they would like to see; and 4) develop strategies, outlining what activities should be performed and by whom. These priorities are taken by the DAC to the different sectors and community based organizations identified as implementers by the DMSAC for the development of more detailed implementation proposals, which are then summarized into the annual district HIV plan. The role of the DMSAC extends beyond development of the plan. Because individual DMSAC members are also responsible for implementing the activities in the plan, the DMSAC as a whole creates a forum to promote linkages among implementing partners, for assisting implementers in procuring or obtaining materials to complete activities and for solving problems that are delaying or weakening planned activities. back to top > Integrating Community Input across Prevention and Care Programs: Maximizing Community Engagement In the U.S., HIV prevention and care programs share many common goals and often refer to a continuum of prevention and care and treatment services. Although prevention and care policy were often separate through the mid-1990s, effective treatments for HIV/AIDS led to an expansion of care-focused health promotion and recognition of the importance of both knowledge of serostatus and the need for behavioral interventions for HIV-infected individuals. The focus on expanding testing and counseling services into care settings, enhancing partner services and the integration of behavioral interventions into clinical care, as well as the requirement to focus on the prevention needs of HIV-infected individuals, has led health departments to better link prevention programs with the care and treatment programs serving these individuals. Several policy documents focused on knowledge of serostatus have been issued, including CDC’s Advancing HIV Prevention (AHP), issued in 2003 to refocus attention on the importance of HIV testing in medical and non-medical settings and linking those infected to treatment and prevention services. Throughout the move to link prevention and care services, the importance of community input and engagement in these programs remained essential. Yet the requirements for community involvement in these programs, primarily articulated as participation in planning groups, are stipulated in discrete guidance documents or legislation (CDC 2003-2008 HIV Prevention Community Planning Guidance and the Ryan White Program legislation). NASTAD has observed a major trend for states to integrate their prevention and Part B consortia planning bodies. Increased linkages between prevention and care were impetus for this trend. Another driving force was the desire to improve efficiency and effectiveness. Over time, the efforts to continually bring in and engage community across multiple planning bodies with increasingly complex and technical tasks became increasingly challenging. Since many jurisdictions found that the same individuals were involved in both prevention and care planning, the dual processes were “burning-out” the community participants and thereby facing a diminishing pool of available and willing community/consumer participants. back to top > Consumers Input Across the Program and Advocacy Front: Kentucky HIV/AIDS Planning and Advisory Council Until 2006, Kentucky had two separate community input bodies – a prevention planning group and a Governor’s AIDS Advisory Council – as well as planning for care services. The Governor’s council was comprised of consumers that advised the Governor on HIV/AIDS policy. Like many planning groups, supporting three separate bodies had become administratively and financially burdensome to the HIV/AIDS program. So the state engaged the community to combine the three bodies into the Kentucky HIV/AIDS Planning and Advisory Council (KHPAC) that had its first meeting in February of 2006. The KHPAC has no more than thirty members, but does represent the epidemic in Kentucky in terms of risk, populations, geography, relevant agencies and training/expertise. Members are approved by the Governor, but if a particular demographic of HIV/AIDS community is not represented on KHPAC, input is obtained from individual interviews, invited representatives of organizations, focus groups, surveys, HIV Prevention Specialists (PSs), Ryan White Care Coordinators, working with the affected communities and input from the State MSM Initiatives, IDU Initiatives and Minority/High-Risk Heterosexual Initiatives. During the first two years as a merged body, KHPAC met as a whole to foster collaboration and new member assimilation. Members gained experience in all three areas of responsibility (care, prevention and legislation). KHPAC continues to meet as a whole and forms work groups to complete specific projects. KHPAC’s products have increased since its inception in 2006. Today KHPAC is responsible for:
As the KHPAC continues, it strives to find ways of improving group dynamics and bringing out the best from its members by focusing on what works and by remembering their shared vision and mission: to prevent the spread of HIV/AIDS, improve the lives of those affected through planning, advising and policy recommendations. back to top > Closing Health departments value the input of community voices in their efforts to provide necessary public health services to their constituents. In order to best leverage the assets that community partners offer, HIV/AIDS programs continually explore new and more appropriate options for engagement. Models and approaches that were relevant in the past may no longer be appropriate or effective. Additionally, many of the key concerns that drove the development of community engagement in the early years of the epidemic have seen meaningful progress. This progress should be upheld as a true success, yet it also calls for a reconsideration of longstanding attitudes and beliefs. As one example, the role that PLWHA play in the fields of HIV prevention and HIV/AIDS care and treatment has changed significantly over time. In the early years of the epidemic, the voices of PLWHA were often overlooked as an essential part of decision-making processes. Seeing the travesty of this omission, AIDS advocates united in 1983 to produce the Denver Principles, a seminal set of actions that demanded meaningful engagement of PLWHA. Since that time, PLWHA have become an integral and essential part of the public health workforce, both inside health departments and in community-based organizations. The broad inclusion of PLWHA in the current system of HIV prevention and HIV/AIDS care and treatment is a true testament to the progress that has been made since the beginning of the epidemic. Health departments and their community partners must remain vigilant to ensure this progress is maintained into the future and, as importantly, they must be given the flexibility to ensure their efforts reach the broadest array of communities possible, particularly those whose voices have not been heard. back to top > Meeting and Planning Calendar Capacity Building Opportunities: For a searchable database of CDC-supported capacity building trainings and events, please visit: the Capacity Building Branch’s Group Events Management System site. April STD Awareness Month April 5-7, 2009 4th International Conference on HIV Treatment Adherence, Miami, FL April 16-18, 2009 HIV/STD Prevention in Rural Communities: Sharing Successful Strategies VI, Bloomington, IN. ABSTRACTS DUE FEBRUARY 6, 2009. May 2009 Viral Hepatitis Awareness Month May 18, 2009 HIV Vaccine Awareness Day May 19, 2009 National Asian and Pacific Islander HIV/AIDS Awareness Day World Hepatitis Day May 21-24, 2009 HIV/AIDS 2009: The Social Work Response, New Orleans, LA June 8, 2009 Caribbean American HIV/AIDS Awareness Day June 27, 2009 National HIV Testing Day August 23-26, 2009 National HIV Prevention Conference, Atlanta, GA October 15, 2009 National Latino AIDS Awareness Day October 29-31, 2009 United States Conference on AIDS, San Francisco, CA. Abstracts due April 24, 2009. November 7-11, 2009 American Public Health Association 137th Meeting and Expo, Philadelphia, PA December 1, 2009 World AIDS Day |
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Credits, Feedback
and Input The NASTAD Prevention is edited by NASTAD staff and is written by staff and prevention experts from around the country. This publication was supported by Cooperative Agreement Number 5U62PS323958-05 from the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention. If you have an idea or program that you would like to include in the Bulletin, or other NASTAD publications, please contact Dave Kern or Lynne Greabell (202/434-8090). To submit feedback, please e-mail us or visit our blog and share your thoughts. Other NASTAD publications are also available on our webpage. Electronic versions of the Bulletin are available on our webpage. |
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