Communicating about CDR

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Responding to HIV clusters requires inclusive, non-stigmatizing communication with community partners, providers, people affected by rapid HIV transmission, and the public. Communicating about CDR activities includes sharing information and understanding community and partner perspectives. This two-way communication can help build trust and strengthen relationships between your health department and partners.

Principles for communicating about CDR

Communication about CDR can include meetings with community partners, written alerts, presentations, and conversations with people in a network. No matter how you communicate about CDR, follow these principles.

Use a health equity lens.

  • Consider the potential positive and negative effects of proposed messages.
  • Highlight that social and structural factors such as racism, stigma, homophobia, transphobia, and poverty contribute to disparities in HIV transmission.
  • Communicate how CDR is working to address health inequities, directing resources to groups most affected by rapid HIV transmission.
  • See CDC’s Health Equity Guiding Principles for Inclusive Communication Principles for more information.

Reduce stigma.

  • Communicate about HIV transmission in a way that does not stigmatize people or their behaviors.
  • Avoid unintentionally blaming people for their circumstances, especially people experiencing rapid HIV transmission.
  • See CDC’s Ways to Stop HIV Stigma and Discrimination for more information.

Avoid dehumanizing language.

  • Use people-first language. Say “people with HIV” instead of “cases” or “HIV-positive people.” Say “people who could benefit from HIV services” instead of “HIV-negative people.”
  • Avoid using acronyms. For example, use “gay, bisexual, and other men who have sex with men” instead of “MSM.”
  • Remember that when discussing a cluster or outbreak, you are referring to people. When appropriate, say “people in the cluster” rather than just “the cluster.”

Use plain language.

  • Plain language makes it easier for everyone to understand and use health information. This is true for all audiences, including the public, health care providers, and community partners.
  • Some CDR terms have different meanings for public health staff than for the public. Adapt messaging to your audience’s needs. For example, the term “surveillance” means something different outside of public health settings. Depending on your audience and the purpose, consider using “HIV data” or “monitoring.”
  • See CDC’s Health Literacy website and Everyday Words for Public Health Communication for more information.

Collaborate with partners and community members to incorporate local communication preferences.

  • Get input from your intended audiences on preferred terms. For example, health departments have options when referring to clusters. “Cluster” and “outbreak” are sometimes used interchangeably, without a clear distinction. Some community partners have shared that terms like “network” feel more inclusive and less stigmatizing. Some health departments have renamed their local CDR activities to incorporate community input.
  • Create culturally appropriate materials in the preferred languages of your audience. Have native speakers help develop these materials.
  • Consider peer educators or others who can serve as community liaisons to share information about CDR and provide community perspectives.
  • Use communication channels (for example, newsletters, websites, or social media) trusted by the affected network.
  • Educate providers, partner services staff, and community organizations so that they can answer questions about CDR from people in networks.
  • CDC’s Community Spotlight stories are also a resource to explain CDR.

Seattle & King County: Collaborating to Strengthen Communication

In one example, Seattle and King County collaborated with a local university. The team conducted interviews with community members and providers about their understandings of molecular HIV detection and response. Interviewers asked participants structured questions and hand-drew graphics showing basic concepts of molecular HIV cluster detection. Participants shared local preferences for communication, for instance, preferring the term “HIV tracing” to “surveillance.” The health department now refers to CDR activities as “HIV tracing.” Participants also provided feedback on the importance of avoiding stigma and blame. These interviews were used to help create a video to explain molecular detection to a general audience. Health department staff who conduct “HIV tracing” interviews share this video with clients who would like more information about CDR.

Communicating about routine CDR activities to increase transparency and collaboration

CDR includes many different public health activities. Communicating about these activities to various audiences and partners can be challenging.

Communicating with the public

Health departments should share information about their routine CDR activities. Include how you conduct cluster detection, the number of concerning clusters, and how the health department protects people’s data. If applicable, include a summary of response activities and outcomes. You can share information in an annual report or public dashboard.

Health departments should refer to the HIV Surveillance Branch “Technical Guidance for HIV Surveillance Programs” for more information.

Communicating with community partners

Communicating proactively with key communities about CDR can increase trust and transparency. Health departments should engage HIV planning groups and other community partners, including providers, to discuss CDR. These discussions may include the purpose of CDR and how the health department:

  • Conducts cluster detection activities (molecular and time-space detection, how often, etc.)
  • Responds to clusters and adapts services based on needs
  • Protects the data of people with HIV
  • Identifies and addresses community needs
  • Understands community preferences for communication and feedback

Some of this information may be included in annual reports or public dashboards, but additional discussion with community partners enables feedback to understand and address concerns.

Medical and service providers have important roles in answering questions and addressing concerns about CDR. Ensure that key partners offering HIV prevention and care services are aware of CDR activities in your jurisdiction. This way, they can answer questions clients might have and refer them to more resources.

See Community Engagement and Partnerships for more information.

Communicating during a response

When responding to an HIV cluster or outbreak, consider how to communicate relevant information with key audiences. Proactive, ongoing communication is important to reach people affected by the cluster and keep the public informed. Effective communication can empower people to improve their health, help partners understand the situation and their role, and fight misinformation.

During a response, your communication strategy should reflect a strong understanding of your community. Early in the planning process, engage community partners who reflect or serve the affected community to gain a better on the ground perspective. Consider ways to partner with them throughout your response to craft messages and plan other response activities.

Different audiences have varying communication needs. Common audiences can include:

  • People affected by the cluster or outbreak, who may benefit from awareness and education about HIV prevention and care services.
  • The public, which may benefit from prevention and care messages, communication about response activities, and how to access services.
  • Service providers, who may be well-positioned to support response activities as partners.
  • Decision-makers in the community, who can play a role in response success.
  • Media, which can assist with communicating information to the public.

For more information, see Communicating During an Outbreak or Public Health Investigation.

Developing messages

People with HIV, community partners, and providers can help you understand the most effective ways to communicate during a response. This includes developing messages that specifically address community needs. Qualitative interviews or focus groups can show you what messages might work best and how to share those messages. Building trust with partners, community leaders, and the public is key to a successful response.

Stating that rapid HIV transmission is occurring can increase transparency and help people understand what is happening in their community. Minimize stigma and avoid blaming the people in the cluster. Consider the right term for your situation (for example, cluster, network, outbreak, or something else). Whichever term you use, describe how you are taking action to address rapid HIV transmission. For example, “HIV diagnoses are increasing in our community. We are taking action to help people with HIV and others in their networks get the services they need.” Throughout the response, reevaluate and modify key messages to address the changing situation.

Relevant topics for response messages include information about HIV testing, prevention, treatment, and stigma reduction. CDC’s Let’s Stop HIV Together materials communicate about these topics. These resources are free, and many are adaptable for health department use. Your health department may also have communication materials that you can use in case of a cluster or outbreak. Proactive, routine communication about HIV prevention and care helps connect people with needed services.

To reach the people affected by an HIV cluster, consider where they spend their time and how they connect. Communication approaches might include:

  • Posters, billboards, palm cards, or other printed resources to encourage testing, treatment, and prevention in community centers, bars, or neighborhoods
  • Online marketing such as social media ads
  • Geotargeted, tailored messaging on hook-up or dating apps

Providers are a trusted source of information.

Health care providers can serve as a bridge between the health department and people who use HIV services. Communicating with providers about a response can include clinician or partner calls, trainings, health alert networks, and dear colleague letters. CDC provides information on effective messaging during outbreak responses. Particularly in areas where HIV is not common, local provider groups may benefit from trainings about HIV or CDR.

Resources

CDC Resources

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