Community Engagement for Data to Care Program
When developing Data to Care programs that use HIV surveillance data to link and re-engage individuals to HIV care, health departments should involve the local community and key stakeholders throughout the program development, implementation, and evaluation phases. Community involvement is an essential element in developing public health programs that respond to local HIV prevention needs and priorities. Representatives of the local community, such as HIV-positive people, public health officials, community-based organizations, and HIV care providers should be engaged on an ongoing basis.
Proactive community engagement methods help to address stakeholders’ needs and concerns in a timely fashion and allow for the community to “buy in” to the process while providing input and feedback from the program’s inception.
Historically, the HIV community has been vocal and engaged in the evolution of HIV surveillance in many jurisdictions, providing input and voicing concerns during the transition from name-based AIDS case reporting to name-based HIV reporting. Central to community and health department concerns was the preservation of privacy and confidentiality for infected individuals and, in many jurisdictions, this concern translated into written or unwritten policies that prevented public health officials from contacting HIV-diagnosed individuals who needed follow-up.
By engaging stakeholders in developing a Data to Care program, health departments can honor the important collaborations and relations that have been built over time with community partners about the role of surveillance systems in public health. Engaging the community in discussion of important topics related to Data to Care is an opportunity to communicate the important ways in which a Data to Care program will benefit the public, including increasing the number of people with access to life-saving treatment, reducing ongoing HIV transmission, and increasing understanding of the health benefits of HIV treatment.
There are shifting views within health departments and the broader HIV community about the value of using individual-level HIV surveillance data for taking public health action such as linkage to and re-engagement in care. Because of the potential benefits to both individual and public health, many now view these benefits as outweighing the concerns and are calling for broader use of HIV surveillance data, though clearly departments must have safeguards in place to protect individual privacy. While there are many considerations to weigh in making this shift, some of which are outlined in the sections on Ethical Considerations and Security and Confidentiality Considerations, there is no question about the importance of involving the local community, from the outset, in discussing and making this shift.