Advocate Development Programme

ALAN Advocate Development Programme

What is an Advocate Development Programme?

  • In-depth training programme on patient advocacy, customized for a small group of leading patient advocates, or high potentials, of a specific patient organisation
  • Combines disease specific topics (knowing the disease, existing treatment, guidelines, R&D roadmap, regulatory roadmap etc.) with cross-disease areas (clinical research process, patient reported outcomes, trial protocols, basics of statistics, regulatory processes and evidence-based advocacy)
  • Delivered as blended learning:
    • # e-Learning sessions delivered by experts through ~5-7 webinars
      # 4 face-to-face training sessions, attached to relevant meetings of the patient organisations (e.g. Acute Leukemia Global Summit) or scientific congresses in Europe and US (e.g. ASH, EHA) to combine training lectures with practical exercises (poster session walk-through, guided participation in patient advocacy tracks, review and discussion of a trial protocol, etc.)

    • Dedicated tutors will coordinate the course and support trainees
    • Duration of course: Approximately 12 months
    • Participants: 8 patient advocates, selected by ALAN. Advocate Development Programme is by application / invite only, as trainees should be most likely to apply knowledge, not only do this out of personal interest
    • Proven methodology: Advocate Development Programmes were initiated, developed and implemented by Myeloma Patients Europe


    Why an Advocate Development Programme?

    • Improve the knowledge about medicines development, regulatory processes and patient advocacy topics relevant for the specific disease area
    • Move beyond anecdotes and opinions towards evidence-based patient advocacy
    • Increase the number of competent advocates with knowledge and skills to engage in discussions and decision-making processes as equal partners in healthcare
    • Enable advocates become multipliers of knowledge within and beyond their patient community
    • Builds a team of “expert patients” within a patient community
    • Build successors and train up patient advocates for future Community Advisory Boards (CABs)