UK Community Advisory Board (UK-CAB)

Community representation resources

PDF guidelines for UK-CAB community representatives on BHIVA and NHIVNA committees and clinical/research study boards

PDF guidelines for UK-CAB community representatives on BHIVA guideline writing groups.

UK-CAB research: What is the impact of having UK-CAB representatives on guideline writing committees and academic/clinical research study boards. L Kwardem, R James and J Shepherd. 23rd Annual BHIVA Conference, 4-7 April 2017, Liverpool, UK. Abstract poster P168. PDF poster

PDF of slide presentation overview of UK-CAB community representation, Garry Brough, UK-CAB Chair, 2017 HIV Treatment Activism training.

 

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.