AL AN had its first ADP in 2020-2021.
What is an ADP?
- 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 by experts as virtual lectures
- 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 ADP?
- 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).