UK Community Advisory Board (UK-CAB)

UK-CAB 50: Looking backwards, moving forward

Friday 25 April 2014

Draft Programme

09.30 – 09.45 Registration, refreshments and expenses
09.45 – 10.00 Welcome, introductions, UK-CAB updates,  member voices
10.00 – 10.20 Introduction to why there is a UK-CAB – Simon Collins
10.20 – 11.00 Clinical trials training: part 1 – Simon Collins
11.00 – 11.10 BREAK
11.10 – 11.45 Clinical trials training: part 2 – Simon Collins
11.45 – 12.30 The AllTrials campaign: what you can do – Ian Bushfield
12.30 – 14.00 Lunch
14.00 – 15.00 The changing landscape of biomedical HIV prevention – Mitzy Gafos, MRC
15.00 – 15.10 Break 
15.10 – 16.15 Conferences feedback: CROI – Simon Collins; BHIVA – Ben Cromarty, EASL – Robert Fieldhouse
16.15 – 16.45 Member feedback, UK-CAB AOB
16.45 Meeting close

Presentations from this meeting:

Introduction to why there is a UK-CAB
Simon Collins, 25/04/2014  [PDF, 267Kb]

Introduction to clinical trials
Simon Collins, 25/04/2014  [PDF, 1.2Mb] campaign
Ian Bushfield, 25/04/2014  [PowerPoint, 188Kb]

The changing landscape of biomedical HIV prevention research
Mitzy Gafos, 25/04/2014  [PDF, 1.4Mb]

BHIVA Spring Conference 2014
Ben Cromarty, 25/04/2014  [PDF, 2.3Mb]

The International Liver Congress
Robert Fieldhouse, 25/04/2014  [PDF, 82 Kb]

Background reading

Back to basics:

Denver principles:

Why we must provide treatment information
This is a resource free to download from HIV i-Base. It is a report from a meeting held in Cape Town in March 2006 that focused on the importance of treatment literacy and how this has developed in different countries. The meeting and it’s aims are documented is this book and web presentation, which includes text from activists from 25 countries and 50 full colour photographs by Wolfgang Tillmans.

But almost right away there is the need for information:

  • How long will I live?
  • Can I get treatment?
  • Does the treatment work?
  • Are there side effects?

The report is here:

Science and research – presentation from the activists training that looks at why we need evidence and not just expert opinion and trial design and research:

Clinical trials: a community guide to HIV research

Understanding clinical trials:
This booklet was produced to answer many questions people ask about clinical trials. It explains what clinical trials are, and why and how they are carried out. It is designed to give you the information you need to help you to decide whether to take part in a trial. It also includes some of the questions you may want to ask before you make a decision about taking part a trial.

Around half of all clinical trials have not been published; some trials have not even been registered. If action is not taken urgently, information on what was done and what was found in trials could be lost forever, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated unnecessarily.

Ben Goldacre: What doctors don’t know about the drugs they prescribe – video
When a new drug gets tested, the results of the trials should be published for the rest of the medical world — except much of the time, negative or inconclusive findings go unreported, leaving doctors and researchers in the dark. In this impassioned talk, Ben Goldacre explains why these unreported instances of negative data are especially misleading and dangerous. (14mins)

Medical Research Council – Clinical Trials Unit (MRC-CTU)

Adult HIV clinical trials
This is a list of all adult clinical trials at the MRC-CTU. It includes current and past trials.

Update on HIV adult clinical trials – BHIVA podcast (2012):
This is a podcast by Nick Paton from BHIVA 2012. It gives an update of all adult clinical trials at the MRC for 2010-15. He gives an update on the following trials -START, HCQ, PIVOT, NEAT-001, REALITY, EARNEST, BREATHER/PENTA 16 and co-infections: TB, HCV and Hep B.



HIV i-Base early reports

NAM news from CROI

EASL European liver meeting:

Financial support

The UK-CAB receives unrestricted funding from some pharmaceutical companies towards the direct costs of holding four meetings each year. This funding supports the travel and accommodation costs for members to attend from outside London, plus the cost of catering.

The content, programme and agenda for meetings is decided by the UK-CAB steering group in consultation with the wider membership. Funding is unconnected to meeting content.

We believe that manufacturers who currently develop and market medicines have a responsibility to actively engage with advocacy organisations and that HIV positive people and their advocates should be able to directly question manufacturers about the safety and efficacy of their products and proposals for future research.

For a list of companies that support the UK-CAB please see the “about us” page.