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AIDS Action Weekly Update Special Edition

Report From the HIV Prevention Leadership Summit
Atlanta, Georgia, June 16-19, 2004

June 25, 2004

Advancing Prevention for All Populations

Empowerment Through Community Planning

According to current policy, effective HIV prevention relies on the input of the affected communities. Through planning groups, money allocations and priorities are determined. Therefore, it is necessary to ensure that planning groups reflect a wide variety of voices, experiences and perspectives from a given community.

In its guidance on the community planning process, the CDC states its first goal as "[support of] broad-based community participation in HIV prevention planning." The CDC's guidelines specify that in addition to valuing and including people of differing backgrounds and experiences, planning groups must involve populations at greatest risk for HIV infection and people living with HIV so that directly impacted populations will have a prominent voice in the process. The CDC defines the three fundamental tenets of community planning as parity, inclusion and representation (PIR). Parity is defined as "the ability of community planning group members to equally participate and carry-out planning tasks or duties in the community planning process"; inclusion is defined as "meaningful involvement of members in the process with an active voice in decision-making"; and representation is defined as "the act of serving as an official member reflecting the perspective of a specific community."

Planning group members value maximum participation from across the community but, at the same time, acknowledge that there are challenges in attracting and retaining people in the process. In several sessions over the course of the summit, planning group members came together to share their challenges and successes in creating planning groups and led interactive discussions so that participants could gain new tools to utilize in their own work.

In a session entitled Ensuring PIR for African Americans in Community Planning, participants discussed how to best include African Americans in the planning process. Using examples from their own communities, workshop participants cited many different factors that make it difficult to engage African Americans in the community planning process. Co-moderator and panelist Ingrid McDowell of the National Minority AIDS Council offered suggestions for locating and recruiting members. She suggested that planning groups ask applicants about their experiences, ask members if they have peers who would could come to the table, and approach community-based organizations about candidates. She also stressed the importance of making new members feel important and valuable from the outset and to give them "buy-in" by perhaps giving them a job or task that contributes significantly to the planning groups work.

Panelist Charles Debnam of the National Association of People with AIDS cited his own experience in joining a planning group. While at first he was bewildered by the process, he went on to say that after orientation and education, he felt that he was equipped with the tools he needed to participate meaningfully in the planning group and address the needs of the community. Co-panelists Anthony Fox, Dana Williams and Reverend Alberta Ware echoed the need for a thorough orientation process and a delineation of roles and responsibilities of planning group members.

Asian and Pacific Islanders (APIs) are often underrepresented in the planning process. While about 2,000 people are involved in the planning groups across the United States, only about 50 identify as API (including Hawaiian), and APIs only appear in planning groups in half of the states, according to Ed Tepporn of the Asian and Pacific Islander Health Forum of San Francisco. Citing the importance of the participation of APIs in the planning process, Mr. Tepporn added that "APIs are often not prioritized if they are not represented." In the session Increasing Parity, Inclusion and Representation for Asians and Pacific Islanders, Mr. Tepporn and Karl Kimpo of the Asian Health Coalition of Illinois addressed some of the challenges that prevent APIs from participating in planning groups and proposed some solutions to help get API communities represented in planning groups across the country. As data are an integral part of prevention planning, Mr. Kimpo posed that much work needs to be done to ensure that data accurately reflect the epidemic within the community. Often API data are aggregated or data are too general. Citing San Francisco as an example of a jurisdiction that provides complete data on the API community, he suggested that an important first step is to work to ensure that the local epidemiologic profile provides an accurate and compelling picture of the local API community.

The session also addressed means of tapping into API communities for potential new planning group members. It was noted that often Asian and Pacific Islander communities are silent on the issue of HIV, making it difficult to locate members who would be willing to speak on behalf of and advocate for the community on a planning group. In the workshop, several venues were identified for cultivating leaders to serve on planning groups, such as community-based organizations, cultural and civic organizations and ethnic-specific press. There are also several cultural barriers that can be overcome to facilitate Asian and Pacific Islander participation in planning groups; for example, providing assistance in filling out applications and translations. Participants also agreed that when possible it is optimal to include an Asian and Pacific Islander in the interview process.

Many people often look towards San Francisco for leadership in HIV issues. Lisa Reyes and Gwen Smith, both of the San Francisco Department of Health, led a session where they offered practices utilized by their planning group as a model for other planning groups in ensuring parity, inclusion and representation. Workshop participants were led step-by-step through the San Francisco HIV Prevention Planning Council's process of recruiting, selecting, training and retention of new members. Mr. Reyes and Ms. Smith shared written materials that their planning group produced to help explain and simplify each step of the process. Each member of the planning council is given a manual which clearly describes the body and the work that they undertake. According to Mr. Reyes, the key to San Francisco's successes with its planning group lies in the proactive and comprehensive approach to ensuring that all new members are educated all the way through from cultivation and through participation on the committee. Despite San Francisco's exhaustive process for its planning group, Reyes commented that some populations are still difficult to reach and retain, such as youth and transgendered people.

Through a variety of sessions, a constant message was conveyed: the best way to ensure that HIV prevention meets the needs of the community is to include the voices of those who are most impacted by the epidemic. While it has proved to be a challenging task to bring all the parties to the table, planning group members around the country are actively engaged in innovative strategies to help the community develop a solution to further HIV prevention efforts in their own community and curb the epidemic.

Back to the AIDS Action Weekly Update June 25, 2004 contents page.

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This article was provided by AIDS Action Council. It is a part of the publication AIDS Action Weekly Update.