Treatment activism: UK-CAB skills and training course 2013

Treatment activism: UK-CAB skills and training course

2-6 October 2013

Harben House, Milton Keynes

cowsinfield

Training programme

Download programme as PDF

Venue

 Presentations from UK-CAB skills and training course

 

Background:

Since the first meetings in 2002 the UK-CAB has developed to a network with more than 575 members from over 120 organisations.

UK-CAB members are now formally involved in all activities run by BHIVA including conference programmes and national treatment guidelines. The CAB meets with all research-based companies and has developed connections with national and internationally recognised experts who present trainings at our meetings.

CAB members have a wide diversity and depth of individual experiences. There are also very different levels of involvement in the range of activities that the CAB is involved in. Some people use the forums to stay connected and up-to-date and others come forward for higher profile activities.

As an activist network and at a time when the NHS is undergoing great change it is important that both new and experienced activists have the opportunity to grow and develop their skills, and to be supported if they want to become more active.

In line with developing HIV activism in the UK, the CAB is therefore organizing a 4-day intensive training retreat in October. This first course will be for 10-12 CAB members.

Aim of the training:
The primary aim of the workshop is to help individual CAB members to improve their skills and confidence. The outcome will be for people who attend the course to become more engaged and active in UK-CAB activities over the following year.

Outcomes of the training:

  • To develop a pool of advocates with stronger advocacy skills, confidence and enthusiasm to go out and get involved in line with CAB roles as patient reps on committees, studies, BHIVA guidelines, etc.
  • Advocates with greater confidence and understanding of HIV treatment, research and science.
  •  Advocates who represent from patient forums from their treatment centres.
  •  Advocates who take up active roles in UK-CAB working groups:
    • UKCAB email forum discussion
    • UKCAB speaker group
    • Advocacy resources
    • BHIVA guidelines and study representation
    • Patient forum development
    • Media/PR

Criteria for attending the course:

  • Have basic literacy levels and willing to learn new skills; this training will be the foundation.
  • Keen, willing and committed with a desire to learn about HIV and science through writing, discussions, reading studies and scientific journals.
  • An opportunity to confront issues you are not confident at; breaking down the barriers.
  • Open about HIV status and active and have a dynamic and interest in changing things.
  • Commit to take on posts on CAB roles such as BHIVA posts, CAB steering group, clinical trials steering groups, Data and Safety Monitoring Board (DSMB), etc.

Applicants will be asked to do some preliminary work to assess their skills level.

The training will include:

  • Understanding trial design and research.
  • Science in research meaning of evidence-base science.
  • Treatment literacy – how to read a scientific paper.
  • Virology and immunology.
  • Personal development – assertiveness, interpersonal skills, how to apply these in daily life.
  • ABC of HIV – inequalities in social settings, NHS structures etc.
  • ABC of good communication – public speaking (practical exercise) to be able to speak at conferences to represent patient views.

Application process:
Applicants will be informed in good time to plan to be away for that time.
Please note that places are limited and all who apply may not be able to attend the course. A panel will decide the outcomes based on applicant’s suitability to the criteria.

Download the application form here.

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Training programme

Venue

Download programme as PDF

Wednesday 2 October 2013

 

Arrival from 2pm

 

5

 

 

 

 

 

Time Subject Presenter
Pre-meeting: informal meetings
Facilitator: Damian Kelly
18.15-19.00 Registration Memory
19.00-21.00 Welcome and introductions All
Setting and understanding ground rules All
Expectations from the training All
Learning methods – how to learn All
Open Q & A
21.00 Dinner

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Day 1: Thursday 3 October 2013

 

Harben_conference_meeting_room678

 

 

 

 

 

 

Time

Subject

Presenter

 Trials and researchFacilitator: Silvia Petretti
09.00-11.00 Science & research – why we need evidence and not just expert opinion Simon Collins
11.00-11.30 Break  
11.30-13.00 Understanding trial design and research Simon Collins
13.00-14.00 LUNCH  
 ABC of good communication Key skill development areas – group workFacilitator: tbc
14.00-15.30 Public speaking Silvia Petretti
15.00-16.30 Dealing with people in authority and running an effective meeting Elisabeth Crafer
16.30-17.00 Writing – introduction to summarizing studies Simon Collins
17.00-19.00 Break and rest
19.00 DinnerEvening session: Film: We were

We-Were-Here4-150x116

 

Discussion with Ben Collins


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Day 2: Friday 4 October

 

Time

Subject

Presenter

 Basic statistics training                                      Facilitator/Presenters: Caroline Sabin and Colette Smith
09.00-13.00 Defining a research questionDifferent study typesp-values and confidence intervals Caroline Sabin and Colette Smith
13.00-14.00 LUNCH
14.00-17.00 Treatment literacy – how to read a scientific paper Caroline Sabin and Colette Smith
17.00-18.00 Break and rest
18.00-19.30 Poetry for activism Godwyns Onwuchekwa
19.30 Depart for dinnerDinner: The Grange Restaurant, 132 Dunthorne Way, Grange Farm, Milton Keynes, MK8 0LW

 

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Day 3: Saturday 5 October 

Time

Subject

Presenter
Treatment and care in the NHS                                                           Facilitator: tbc
09.00-10.30 Introduction to ARVs and treatment guidelinesExperience as community rep Garry Brough
10.30 -10.45 BREAK
10.45-13.00 Basics of virology and immunologyBeing an HIV doctor and working in the NHS.How advocates and doctors can work together Dr Laura Waters
13.00-14.00 LUNCH
 Effective representation  How to be effective in working groups: representing the community
14.00-16.00 BHIVA executive committee Garry Brough
CAB Steering Group Silvia Petretti
Clinical trials steering group tbc
Non-RCT studies (e.g POPPY study) Roger Pebody
Data and Safety and Monitoring Board (DSMB) Simon Collins
16.00-17.00 Community and pharma – open discussion Lead – tbc
17.00-18.00 Break and rest
19.00 DinnerFilm: ACT UP film How To Survive a Plague

 how-to-survive-a-plague

 

Discussion with Simon Watney

 

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Day 4: Sunday 6 October

 

Time

Subject

Presenter

Mapping: where do we take these skills?
Facilitator: tbc

09.00-11.00

How the CAB works SG members
Opportunities within the CAB – representation posts SG members
Attending to a conference: what to look for SG members
NHS structures Mark Platt

11.00-11.30

BREAK

11.30-13.00

Presentations from each member on what they learnt, feedback from participants Facilitator
AOB Facilitator
Evaluation and close Facilitator

13.00

LUNCH
Departure after lunch

 

 

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Published: July 19, 2013
Last edited: May 12, 2015

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