UK Community Advisory Board (UK-CAB)

BHIVA guidelines writing groups – background

This document provides background information for members serving as community representatives on BHIVA guidelines writing groups.

Guidelines writing groups are time-limited committees of HIV medical professionals and researchers convened by BHIVA to draft evidence-based standards of care for different aspects of HIV treatment.

BHIVA guidelines writing groups

The British HIV Association (BHIVA) is the UK association representing professionals in HIV care. It is an established, respected organisation with over 800 members.

BHIVA treatment guidelines are valuable documents that set the standard of care. BHIVA has produced a range of guidelines for the management of HIV infection since 1990. Guidelines are published in the HIV Medicine. Guidelines are written for the UK, but influential internationally.

BHIVA treatment guidelines are drafted by a writing group of BHIVA members – doctors, pharmacists, nurses and researchers. BHIVA guidelines are evidenced-based, drawing on data from clinical trials.

Community representation on guidelines writing groups

Each writing group has community representation to ensure a “patient” point of view. UK-CAB recruits and selects community representatives for BHIVA writing groups.

The community representative role

In summary, community reps are expected to gather comments from other UK-CAB members and represent these to the writing group in a timely way.

Being a community rep is an important role. There are responsibilities to both UK-CAB and to BHIVA.

UK-CAB aims to field two community reps for each writing group:

  • a main community rep knowledgeable about treatment and writing guidelines who acts as a community rapporteur and representative.
  • a “shadow” community rep who is less experienced and wishes to gain experience of the guidelines writing process.

Community representatives are public positions – people need to know who is representing them. Representatives’ names are listed on the UK-CAB website, and may also be listed on the BHIVA website.

Community reps need to be well versed in HIV treatment and have a good understanding of current and past clinical trials and their results. If there is wide interest in a guideline, a community rep is expected to convene a group of UK-CAB members to inform the guideline’s development.

Shadow community reps need an interest in learning more about HIV treatment and the process of writing the BHIVA guidelines. The main community rep will act as a mentor for the shadow.

The Steering Group has the right to remove a community representative at any time if they fail to fulfil the role as expected, or if asked by BHIVA to do so for a similar reason.

How guideline writing groups work

BHIVA writing groups are flexible and fluid. The working environment is professional. Work involves reviewing documents and attending meetings.

Meetings are generally held in London in office hours. Teleconference facilities are provided. BHIVA will usually pay travel expenses for community reps travelling from outside London.

The guideline writing process usually takes less than a year. There is no formal time period for membership. The UK-CAB Steering Group suggests community reps stand down when a guideline is completed. A community rep who stands down may apply for re-selection for the next edition of a guideline if desired.

BHIVA requirements for community representatives

Community reps must:

  • have experience and knowledge in the relevant area of HIV treatment.
  • have an understanding of current and past clinical trials and their results.
  • be able to work within the BHIVA writing group structure, putting forward views from the community without disrupting the functioning of the group.
  • be able to express views assertively and objectively, and by drawing on evidence, rather than emotion, to make a point.
  • be able to attend all or most of the writing group meetings.
  • be able to review documents and provide comments, often to a tight deadline.
  • use BHIVA’s Internet-based discussion facility.

UK-CAB requirements for community representatives

Community reps must:

  • be a UK-CAB member living, working or studying in the UK.
  • meet the requirements set out by BHIVA.
  • keep UK-CAB members informed of progress and outcomes by reporting regularly via the UK-CAB message boards.
  • actively gather community views and opinions on the detail of proposed guidelines and represent these to the writing group in a timely fashion.
  • support the smooth running of the writing group, acting in a respectful way to all parties.
  • aim to attend all meetings of the guideline writing group.

Community reps are expected to:

  • provide a broad-based patient/advocate perspective, not just a personal one.
  • report back within five working days of a writing group meeting.
  • report at other times if needed, for example when a key detail is formulated between meetings.
  • arrange for the shadow rep or (via the UK-CAB Steering Group Chair) someone else to attend if unable to attend a meeting themselves.

Community reps are expected to mentor and coach less experienced shadow reps, and, if needed, convene a wider group of UK-CAB members to inform a guideline’s development.

Selection process

Main community representative: The UK-CAB Steering Group will ask members to submit a statement saying how they are qualified and why they are interested in a community representative role. The Steering Group will then select the most suitable candidate, using the criteria outlined above.

Shadow community representative: After the selection of the main representative, the Steering Group will ask members submit a statement saying how they are qualified and why they are interested in a shadow community representative role. If there is more than one candidate who meets the criteria, there will be an election.