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Community outreach in MRC national and international trials

Community outreach in MRC national and international trials. Simon Collins HIV i-Base, London UK-CAB and ECAB. Community outreach Involvement at all levels of our care Individual treatment decisions Community education Trial design International networks

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Community outreach in MRC national and international trials

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  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 (>600 members, >120 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 (>5 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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