Rob Quinn is a guest blogger and member on the Statewide Consumer Advisory Board at the Massachusetts Department of Public Health, Office of HIV/AIDS.
Two years after the first AIDS cases were reported in the U.S. in 1981, a group of men and women, most of them diagnosed with AIDS, gathered in Denver to demand greater involvement in the crucial decisions that were affecting their lives. They developed The Denver Principles, the cornerstone of the people with AIDS (PWA) self-empowerment movement.
From its origins in early HIV treatment activism in the 1980’s, the need for community engagement has attracted increased attention in recent years. This is largely due to the highly vocal demands of HIV activists, the recognition that inclusion and transparency are ethical responsibilities, and the fact that experience has shown that people living with HIV/AIDS (PLWHA), like me, provide a critical and necessary perspective on the development, implementation, and evaluation of programs and services that are designed to ultimately meet our needs as the consumers of those services.
Community engagement was given a working definition by the Center for Disease Control and Prevention (CDC) when its first edition of its Principles was published. The organization agreed that community engagement was:
“…the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people. … It often involves partnerships and coalitions that help mobilize resources and influence systems, change relationships among partners, and serve as catalysts for changing policies, programs, and practices.“
- (CDC, 1997, p 9 – published in CDC, Principles of Community Engagement Second Edition, 2011, p. 3).
As defined by the CDC, “the goals of community engagement are to build trust, enlist new resources and allies, create better communication, and improve overall health outcomes as successful projects evolve into lasting collaborations” (CDC, 2011, p. 3).
Community engagement means bringing together PLWHA and other community stakeholders such as neighborhoods, communities, policymakers, advocates, governments, religious and cultural leaders, funders, international agencies and regulatory bodies to develop partnerships, address gaps and difficulties, and support families and individuals. Building on unique experiences and strengths, each stakeholder has a different role to play in the collaborative process of working towards optimal HIV health outcomes along the care continuum.
The Community Advisory Board (CAB) is one form of community engagement. CABs can play an important role, helping ensure that those of us most affected at the local level have a channel through which to voice our needs and concerns, and obtain information. Most CABs’ membership reflects the profile of HIV/AIDS in their community in terms of race, ethnicity, gender, sexual orientation, gender identity, mode of transmission, and geographic region. It is also vital to use other ways to engage and solicit input from the community.
Recognizing this need, the Massachusetts Statewide Consumer Advisory Board’s (SWCAB) community engagement practices have evolved over time. While still relying heavily on the SWCAB, we are moving in a new direction – identifying kinds of conversations for more consumer feedback and engaging a broader network of consumers. These conversations include drug user health, PrEP, gay men’s health, barriers to care and linkages to care. Moving forward other approaches, both formally and informally, may include consumer surveys, needs assessment surveys, interviews, focus groups, mobile meetings in targeted communities, suggestion boxes, consumer forums, public hearings and working groups, among others.
Engaging a community in discussion increases everyone’s level of awareness, allows individuals to advocate for their ideas, and offers a format to gather advice or guidance based on the community’s expertise and experiences. The diversity and the number of identified stakeholders are increased. Consumers and other stakeholders are educated on the issue and invited to contribute to the process, thereby expanding access to available knowledge and skills. When communities are engaged at the beginning and throughout the process they are apt to be more receptive to the outcome, have capacity to implement change, and may maintain long-term partnerships.
We PLWHAs provide a critical and necessary perspective on the planning, implementation, evaluation, and quality improvement of HIV/AIDS policies, programs and services that are designed ultimately to meet our needs. In my opinion, it is our responsibility to participate in community engagement discussions and decision-making that so significantly impact the lives of those of us living with, affected by or at risk for HIV/AIDS. Wherever you may be on the HIV disclosure continuum, there is an opportunity. Whether it be completing an anonymous survey, attending a consumer forum or educating Congress on HIV/AIDS—Your Voice Matters!
Center for Disease Control and Prevention (CDC). (1997). Community engagement: Definitions and organizing concepts from the literature.
Center for Disease Control and Prevention (CDC). (June 2011). Principles of community engagement. Second edition.