STYPA 2020 - Shaping The Future of Patient Advocacy

What is it?

The Summer Training Course for Young Patients Advocates (STYPA) – Leadership Programme is an exciting and unique opportunity offering a tailored high-quality training to young patient advocates or representatives, who have the motivation to learn more about advocacy and maximise their leadership potentials in a real environment. Our vision for STYPA is to create a platform where young patient advocates would empower, inspire, and learn from each other on an annual basis.

What was the topic?

The 2020 edition looked at how patient advocacy was evolving and facing emerging challenges and opportunities, and the importance of keeping a strong ethical approach. Young patients’ voices are increasingly heard by regulatory bodies such as EMA, industry, HTA bodies, and policy makers, to ensure that their perspective is not missed to inform the decision-making process. As usual, these opportunities raise questions around the representativeness of those bringing the patient perspective, their potential conflict of interest or risk of bias depending on the role patient advocates play in which context. Through the training course, EPF raised awareness among the new generation of young patient advocates on current challenges, obstacles, opportunities and shared good practises for ethical patient advocacy in complex environments.

Where and when?

Due to the COVID-19 pandemic, STYPA 2020 was performed fully online and allowed the participants the opportunity to participate in a combined training, consisting of two phases.

In the first phase the participants worked on a designated online platform, while participating in whole group webinars.

During the second phase the participants went through a peer led coaching, while tackling team challenges and applying their new learnings by completing real world advocacy tasks. The young patients were able to attend various online events, such as whole group webinars, team leaders’ meetings and team hangouts, while being constantly in touch through the dedicated WhatsApp groups and being supported by the trainers and the EPF staff.

Who were the participants?

All participants were:

  • Young patients with a chronic and/or lifelong illness/condition who were affiliated with a patient organisation,
  • Young patients with a chronic and/or lifelong illness/condition who were not affiliated with a patient organisation,
  • Young employees or volunteers of a patient organisation,
  • Alternatively, a family member/carer of a young patient with a chronic and/or lifelong illness/condition could attend the training if he/she accompanied a young advocate and is at the same time an active patient advocate.
  • 18 - 30 years of age
  • From and/or living in Europe.

Participants from the previous edition of STYPA were also welcomed to apply for this edition.