UK Community Advisory Board (UK-CAB)
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  • JOIN THE NETWORK

    • About the UK-CAB

    The UK Community Advisory Board (UK-CAB) is a network for community HIV treatment advocates across the UK.

    The UK-CAB has three main aims.

    1. To develop and strengthen this network. We use an online forum and at meetings.
    2. To provide training on treatment issues. This includes meeting with doctors, researchers and drug companies. All resources are posted online.
    3. To support community representation when this affects our care. This includes on guideline panels, research studies and national commissioning groups. Reps are elected by CAB members.

    It is easy to join the UK-CAB. Membership is open to HIV positive people and community advocates. You can join as an individual or to represent a group. You will need an email address to join.

    The only restriction is that you are not directly linked to an HIV drug company.1

    The CAB is run by an steering group (SG). These are members are elected. The SG leads the programme for meetings and CAB development.

    Treatment advocates’ network.

     Forum and message boards.

    The UK-CAB runs an online  web-based message board.

    These online forum help connect members across the UK.

    This includes a confidential discussion list. These posts are only for UK-CAB members.

    The forums support our work with other organisations.

    • To help design clinical trials.
    • To comment on treatment guidelines.
    • To make it easy for members to connect with each other.
    • To stay up to date with the latest research.
    • CAB members can post personal posts. We can also view or forward information from other groups.

    Meetings and expert training.

    UK-CAB meetings.

    The core programme includes training workshops. This usually includes four meetings a year. The content for meetings is decided by the steering group. During COVID-19 we moved to virtual meetings.

    Meetings include:

    • Presentations from leading researchers.
    • Feedback from recent medical conferences.
    • Training on practical and technical issues.
    • Formally meeting with HIV drug companies.

    Speakers include doctors, researchers and experienced advocates.

    Face-to-face meetings are attended by 25-35 people. Sometimes more people join virtual meetings.

    Transport and accommodation costs are paid for participants who live and work outside London. 2

    Presentations and reports from workshops are posted online for all meetings. This includes pre-reading for the meeting. These are open access to non-members.

    Training courses

    The UK-CAB has run four residential training courses in 2017, 2016, 2014 and 2013.

    These were residential courses for 12-15 members that run for 2 to 4 days.

    These courses were funded separately, including from the Lottery Fund.

    Community representation

    The Denver Principles demanded that people living with HIV should be involved in our care. This principal is still supported by the UK-CAB.

    We think reps should be elected by the community.

    This work involved representing broad interests of different HIV communities. For example to cover different genders, sexuality, race etc.

    Sometimes these positions are for people living with HIV. Sometimes it can include HIV negative people working on our behalf.

    This includes input into:

    • Clinical guidelines (including BHIVA and BASHH).
    • Design and running of clinical trials.
    • Commissioning NHS services.

    Each post is shared by two or three people. This often links experienced and new advocates together.

    What is a CAB?

    CAB stands for Community Advisory Board.

    CAB enables people who are directly affected by an illness to influence the design and management of research.

    CABs were an early demand of ACT-UP in the US. This led to the US NIAID including community input in HIV research. Since then, some CABs have been initiated by the community and others have been developed formally by research groups.

    The UK-CAB is an independent community-initiated CAB.

    It was founded in 2002 by HIV i-Base. It is as an umbrella organisation to connect people across the UK. It was loosely modelled on the European Community Advisory Board (ECAB). (UPDATE LINK TO: https://www.eatg.org/projects/ecab/)

    For a history of CAB involvement in research see this useful paper from 2001: The role of CABs: involving communities in the informed consent process.

    Funding

    • Since 2011, i-Base provide admin support to the UK-CAB. Other costs are covered by grants to the UK-CAB. This includes support from drug companies for meetings.
    • Training courses are funded by specific grants, including from the Lottery Fund.
    • From 2008-2011 the CAB was supported by the Monument Trust. This allowed us to employ a part-time administrator.
    • From 2002 to 2008, running costs for the UK-CAB were supported by i-Base. Drug companies funding meeting costs.

    We have always asked HIV drug companies to support the direct costs for UK-CAB meetings.

    This covers travel and accommodation for members coming from out of London. It also covers the cost of catering. This industry funding helps support the CAB as a national project. A list of supporting companies since the UK-CAB was established in 2002 and from the most recent years is included below. 3

    The UK-CAB membership and Steering Group decides the content for all meetings.

    Meetings with a drug company covers their current products and future research. The decision for which companies to invite and the agenda for these meetings is made by the UK-CAB.

    We also ask other researchers to involve the UK-CAB in planning studies and ongoing research. We ask that community involvement in research be included in the budget of grant proposals so that some of the CAB work can be supported in this way by independent research.

    Notes

    1. Directors and employees of pharmaceutical companies involved in research into HIV treatment and diagnostics, or employees of agencies providing PR, marketing and other professional services for these companies may not join the UK-CAB. We work closely with industry, but the UK-CAB is a community-based network, and it is important to respect this boundary.
    2. UK-CAB cannot provide any funding for people travelling from outside England, Wales, Scotland, Northern Ireland, Isle of Man or the Channel Islands.
    3. Since 2002, the UK-CAB has received support towards meeting costs from the following pharmaceutical companies: Abbott Laboratories, AbbVie, Boehringer Ingelheim, Bristol-Myers Squibb (BMS), Gilead Sciences, GlaxoSmithKline (GSK), Janssen-Cilag, Koronis, Merck Sharp and Dohme (MSD), Roche Laboratories, Theratechnologies, Tibotec, Pfizer, ViiV Healthcare.
    4. Since April 2014, the UK-CAB has been supported by  AbbVie, Bristol-Myers Squibb (BMS), Gilead Sciences, Janssen-Cilag, Merck Sharp and Dohme (MSD) and ViiV Healthcare. This funding is unconnected to the programme and content of meetings.