Community representation

Background

UK-CAB provides community representatives for: bodies that write guidelines that set the standard of care, clinical trial steering committees and data monitoring committees and some other working groups.

Many of these groups are technical in nature, involving researchers, doctors and other professionals. The work usually involves attending meetings and reviewing documents.

Community representatives are expected to contribute positively to these meetings, advocating a wide community point of view (not their own personal view). Community representatives are expected to actively gather views from members and report back in a timely way.

It is often an advantage if community representatives are HIV-positive and open about their status,. On some occasions this will be a requirement for becoming a community representative but in most cases will not.

In many cases a community representative will need a good understanding of a particular aspect of HIV treatment and making a case based on scientific evidence. To increase the number of members who have this understanding we aim to develop a training programme for members give them the right skills and knowledge. There is already a shadowing arrangement whereby experienced members support development of a less experience colleague.

Election and selection of community representatives

Community representatives are elected wherever possible. For representative governing bodies, for example the BHIVA Executive Committee, community representatives are always elected. Sometimes candidates are selected against an agreed specification prior to election.

Where particular skills and experience are required, community representatives are selected against an agreed specification.

Whenever there is a selection – for a particular reprentative role or as candidates for election – the Steering Group makes the selection. The Steering Group may co-opt other members and external experts to assist with this, or delegate selection to another group of members.

Community representatives may be subject to ratification by the body in which they will participate.

Expectations, responsibilities and length of service for community representatives are set out separately for each position. As a general rule, representatives are expected to:

  • Have experience and knowledge in the relevant area of HIV treatment
  • Be able to express views assertively and objectively, and by drawing on evidence, rather than emotion, to make a point.
  • Provide a broad-based patient/advocate perspective, not just a personal one
  • Be able to attend all or most of the relevant meetings
  • Actively gather community views and opinions
  • Keep members informed of progress and outcomes, reporting back within 5 working days of a meeting

Community representatives are public positions. Representatives’ names are listed on the website.

Election process

Elections will be conducted via email. The secretariat will act as teller. A scrutineer will be appointed.

Where candidates must first meet a specification, this will be published on message boards and/or website.

Candidates will provide a personal statement saying why they wish to be considered, including how they meet any necessary criteria for a role, for example understating of a particular area of HV treatment.

If requested, candidates will provide the name of another member who endorses them standing for election. Entry into the vote will depend on this member providing an endorsement.

A simple majority vote will determine the outcome. In the case of a tie the Chair will have a casting vote.

All members will be alerted to the deadline for offering themselves as a candidate and for voting.

All members will be alerted to the outcome.

Selection process

A specification will be published on the message boards and/or website.

Candidates will provide a personal statement saying why they wish to be considered, including how they meet any necessary criteria for a role, for example understating of a particular area of HV treatment.

If requested, candidates will provide the name of another member who endorses their application for selection. Consideration for selection will depend on this member providing an endorsement.

After the closing date, applications will be considered by the Steering Group or group of members making the selection.

All members will be alerted to the deadline for applying for positions.

All members will be alerted to the outcome.

Removal of community representatives

Community representatives who do not perform their role as expected will be removed by the Steering Group. This will be a last resort. There is a simple appeal procedure against removal, but the Steering Group’s decision is final.

Resignation

A community representative may resign by informing the Steering Group.

Ad hoc deputies

The Steering Group will arrange for ad hoc depties, for example when a community representative cannot attend a meeting at short notice. It is the representative’s responsibility to tell the Steeering Group this will be necessary.

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Published: October 13, 2010
Last edited: August 6, 2013