ALAN Advocate Development Programme
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).
Who should apply for the ADP?
Patients, carers, advocates, and community members who are determined to develop professional advocacy skills in the fields of acute leukemia and who are committed to improving transparency in clinical development and patient engagement, access, and outcomes for patients around the world.
What is expected?
- Commitment to attend >10 virtual lectures, 1 – 2 hours each
- Commitment to invest some learning and homework hours (e.g. pre-reads, case studies, responding to questions, and completing assessments and evaluations).
- Commitment to attend the full duration of the following congresses
- EHA Annual Congress (10 – 13 June 2021, Virtual)
- ALAN Global Summit (exact date and location TBD).
- Fluency in English is essential to participate in lectures and discussions
- Participants are required to have access to a working computer with a functioning camera and audio
- The ADP welcomes patient advocates with any kind of professional background. However, healthcare professionals who are actively practicing their medical profession (e.g. as a haematologist or nurse in a clinic) are not eligible to apply for this programme.
The program started in December 2020 and ran for a year – It is now completed !