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Community outreach in MRC national and international trials

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Title: Community outreach in MRC national and international trials


1
Community outreach in MRC national and
international trials
  • Simon Collins
  • HIV i-Base, London
  • UK-CAB and ECAB

2
  • Community outreach
  • Involvement at all levels of our care
  • Individual treatment decisions
  • Community education
  • Trial design
  • International networks
  • Resourcing and development
  • Questions throughout

3
  • Community Advisory Boards (CABs)
  • Specialise in scientific training
  • Trial review and design
  • Representation on Steering and Executive Cttees,
    DSMB, Guidelines cttes
  • High involvement of HIV advocates
  • Network for 2-way communication to advise the
    trial and to report through community networks

4
  • CAB networks
  • National CABs
  • UK-CAB France (TRT-5) Italy Spain (FEAT)
    Germany Portugal
  • European CAB (ECAB) - Pan European advocacy
    group - working group of European AIDS Treatment
    Group
  • World CAB - global access and pharmaceutical
    pricing (generic and brand), and part of
    International Treatment Preparedness network
    (gt600 members, gt120 countries

5
  • UK-CAB.1
  • 4 yrs old, 130 members from UK
  • Broad representation of affected communities
    approx 50 African, 50 men/women 70 HIV and
    includes haemophilia and IDU networks
  • Includes all main ASOs - ie producers of
    community publications plus individuals
  • 4 meetings/year (30 people) - at MRC training
    and strengthening support network

6
  • UK-CAB.2
  • Linked by email list treatment discussion,
    including related policy issues administration
    for meetings and reports
  • Chooses community reps for trial cttees
    (national, Optima, Esprit, Silcaat, SMART,
    INSIGHT, PENTA) and guidelines (BHIVA)
  • Forum for communication out from trials and
    research networks
  • Accountable to the wider community

7
  • European CAB (ECAB)
  • Pan-European CAB Approx 35 members from 20
    countries
  • 5-6 meetings annually, each 3 days
  • Meets all major companies running international
    trials, and works closely with networks of
    independent investigators
  • Includes Protocol Review Group
  • All national CABs are represented

8
  • European CAB (ECAB).2
  • Choosing community representatives for
    international steering cttes, treatment
    guidelines panels (resistance, adherence,
    treatment, coinfection) and often for involvement
    in scientific meetings
  • Advocates are active in their own countries and
    well connected to those community networks

9
  • MRC trials
  • As with all trials, community representation is
    expected on scientific and steering committees,
    and sometimes on DSMBs
  • Help focus trial design that will continue to be
    relevant from community perspective
  • Helps faster enrollment, and greater publicity
    in the community
  • Can raise and communicate problems to wider
    community

10
  • Example Esprit/Silcaat
  • Community represented in trial design and at
    investigator meetings, including presenting
    issues form community perspective
  • Raise safety concerns over management (ie issue
    of dose reduction)
  • Raise trial profile (UK enrolled highest number
    of patients)
  • Advocate for Silcaat to continue after Chiron
    withdrew funding

11
  • Example SMART
  • Community involved in initial discussions (gt5
    years ago)
  • Community reps on each of 4 regions organising
    and investigator committees
  • High community profile of trial contributed to
    rapid enrollment
  • Working with community representatives, helped
    communicate difficult and sensitive results
    following DSMB-recommended discontinuation in
    January 2006

12
  • Conclusions
  • Community partnership is essential in trial
    networks
  • Requires resourcing when planned most advocates
    volunteer for CAB work
  • Significant community training required for
    representatives to be actively involved
  • Resources are especially important for
    international trials (where one advocate may
    represent several countries)
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