Community representation

Why does it matter?

People living with HIV should be involved in all aspects of their healthcare. This was an early demand of the Denver Principles and supported by the later principle of the Greater Involvement of People Living with HIV (GIPA).

As people living with HIV, we have experience of using services and managing our health and are connected to local communities. This means we bring wider and credible perspectives to decisions that affect our care. But we are not just service users – we can change perceptions, break down stigma, educate and engage, and set our own agendas.

How is it done?

Community representation (sometimes called patient involvement) happens through a process of consultation and feedback. This is done through the role of a community representative (“rep”). Reps are elected by the community and work across affected communities to represent the range of their concerns and experiences.

UK-CAB facilitates the selection and election of community representatives onto guideline writing groups (such as BHIVA and BASHH), clinical research groups, commissioning bodies and other advisory groups. These posts are for a fixed period of time and are voluntary.

UK-CAB works to ensure these positions represent the community in all its diversity. We encourage experienced reps to support potential new ones by allowing them to shadow them for a period of time before taking on a community rep post themselves.

List of current community reps.

UK-CAB also has a training programme to help members to develop advocacy skills and to gain scientific and clinical knowledge.