Community Engagement and Partnerships

Engaging communities and partners is essential for CDR. This engagement helps health departments address community concerns and keeps partners and the public informed. Transparency provides a foundation for trust and collaboration, and community partners play a vital role in response.

People with lived experience, including people with HIV, have valuable insight into improving HIV prevention and care services. Community partners offering HIV and other support services have trusted relationships with the communities they serve. These organizations also understand their clients’ lives and needs, including access to health and social services. With these insights, community partners can help health departments identify and address urgent needs.

Identifying community partners for CDR

Health departments should develop, strengthen, and maintain partnerships with community members and organizations for input on CDR. When planning for CDR activities, health departments should engage community partners, including:

  • People with HIV and organizations that represent them
  • People who would benefit from HIV prevention services and organizations that represent them
  • Providers caring for people with HIV, including Ryan White HIV/AIDS Program recipients
  • Community-based organizations (CBOs) that provide services to priority populations
  • Tribal councils and communities
  • HIV community planning groups, community advisory boards, or other local planning bodies

Depending on the local context, additional partners may include:

  • Syringe services programs or other harm reduction services
  • Behavioral health providers
  • LGBTQ+ organizations
  • Academic institutions, including medical schools
  • Housing support organizations
  • Social service or other organizations that offer culturally and linguistically competent support services

Collaborating with other health departments can support multijurisdictional response and help people access HIV services across multiple areas.

Documenting community partners and resources that may be available can help identify existing strengths and highlight underserved populations or regions. See additional resources for more information.

Health Equity

When identifying community partners for CDR, consider groups that are underserved or marginalized. Health departments should work to build trust and engage communities experiencing disproportionately high rates of HIV. People from these communities should serve as expert consultants, providing valuable perspectives to strengthen successful cluster response. Compensating community members for time and travel increases equity and participation from people who have been marginalized.

Planning and implementing CDR

After identifying community partners, health departments should work with them to develop or refine CDR plans and activities. Health departments should engage planning groups to ensure that CDR activities benefit people with HIV and those who need HIV prevention services. Your HIV community planning group should include representation from local communities experiencing rapid HIV transmission.

Health departments can further strengthen CDR activities by gathering input through a subcommittee or dedicated planning group session.

Considerations for engaging community planning groups about CDR

Who? Include representatives from the key community partners you identified.
Where? Consider whether to hold in-person, online, or hybrid meetings. In-person meetings may foster stronger relationship-building, while online meetings may have higher attendance.
When? Outline a consistent meeting frequency (for example, monthly or quarterly). Consider more frequent engagement when establishing new relationships or during a cluster response.
How? Outline a process for incorporating community feedback into CDR activities and reporting back. Plan resources to support ongoing engagement, including equitable compensation or travel support for people with lived experience.
What? See “Communicating with community partners” in the Communications section for guidance on what to discuss.

Meaningful community engagement includes a spectrum of activities, from education to relationship-building to routine partner or planning group meetings and collaboration. Increasing levels of engagement can build trust.

Community involvement process

Image source: CDC, Ending the HIV Epidemic in the U.S.: Community Involvement. 2023.

For example, health departments can:

  • Educate service providers, organizations, and priority populations about the purpose and impact of CDR work.
  • Host CDR-focused forums with community groups to strengthen relationships that can be helpful when a cluster or outbreak occurs.
  • Collaborate with community partners for cluster investigation and response activities.

To evaluate your efforts, track engagement at these meetings. Use surveys or other tools to collect feedback that can help increase participation.

Minnesota Department of Health (MDH) Spotlight

“At MDH, we’re experts in public health, but we’re not experts in what it’s like to be living in an encampment or coping with a substance use disorder. It’s important for us to have consistent, authentic conversations with the people who are providing and receiving services on the ground, so we can better understand what’s really happening and be sure we’re supporting practical interventions that can make a significant difference.”

-Anna Bosch, operations coordinator for HIV outbreak response at the Minnesota Department of Health.

To learn more about the Minnesota Department of Health experience, see their CDR Community Spotlight story.

Building trust through transparent communication

Health departments should engage HIV community planning groups about CDR activities at least annually in the following ways:

Introduce the concept of CDR, including the purpose and activities, to HIV community planning groups. 

Provide an update at least annually to HIV community planning groups on CDR activities. Include a short description of your routine cluster detection activities. This should include methods (for example, molecular and time-space), frequency of analyses, and number of concerning clusters identified. Updates should also describe the impact of CDR on public health activities and policy changes that address HIV service gaps.

Health departments without clusters can provide an overview of analyses conducted and plans to respond in case of a cluster.

When describing populations experiencing clusters and outbreaks, avoid stigmatizing language. If you discuss characteristics of people in clusters, explain that social and structural factors drive HIV disparities. That includes racism, xenophobia, stigma, discrimination, homophobia, transphobia, poverty, unstable housing, and more.

Gather input from community planning groups and other partners on ways to improve response efforts, build trust, and strengthen relationships. Allow time for questions about CDR. Provide opportunities for members of planning groups to present. Consider getting input from the broader community, for instance, through interviews or focus groups. Some health departments have contracted with outside organizations to facilitate community engagement.

Although data show high levels of community support for HIV CDR, some have expressed concerns about aspects of this work. Engaging community partners about CDR can promote understanding and provide space to address these concerns. Discussing local HIV data protections and laws provides opportunities to strengthen data protections with community input.

Engaging community partners during a response

During a response, health departments should communicate with affected community members and the community partners who serve them. Sharing information is valuable and can help identify gaps in HIV services. Then, work with partners to address those gaps as part of the cluster response. This engagement should be collaborative and continue throughout the response.

Cabell County, West Virginia Spotlight

People with HIV and community partners played key roles in responding to a 2019 HIV outbreak among people who inject drugs in Cabell County, West Virginia. The West Virginia Bureau for Public Health and Cabell-Huntington Health Department partnered with CDC to engage the local community in many ways, including:

  • Meeting frequently with organizations serving people with HIV to improve health services, including HIV testing and treatment
  • Organizing meetings with the public and health care providers to inform them about the outbreak and hear their perspectives
  • Talking with people in the clusters, or others in their networks, to understand their experiences and needs

From these engagements, a new outbreak communication plan was developed. The local health department and service organizations also improved delivery of HIV and substance use prevention and care services.

For another example of successful community engagement during a cluster response, see the CDR Community Spotlight about Detroit, Michigan.