PatientAdvocacy.Academy 2020

Young Leaders – future of a patient advocacy

PatientAdvocacy.Academy 2020 was specially designed for young patient advocates (under 30). We strongly believe that young adults can bring a new energy and new ideas to the rare disease community. They can also bring knowledge about new technologies and new forms of communication, influencing decision-makers to pay attention to the patient organization, but also the ability to respond to the needs of the young generation. 

Well-equipped Young Leaders

Our main goal was to equip Young Leaders with practical skills needed by every patient advocate. The course provided the participants with the opportunity to:

  • Gain knowledge on how a patient organization works
  • Learn where to find necessary information on healthcare systems
  • Learn the principles of organizational branding and communication
  • Find their place in the patient organization and make use of their full potential

PatientAdvocacy.Academy 2020 – even more engaging

The 2020 edition, as addressed to Young Leaders, was enriched with additional online activities and consisted of 4 main elements:

  • 14-day video course with videos lasting about 15 minutes each
  • exercises in PDF files for each lesson allowing participants to consolidate the knowledge and immediately translate it in practical solutions for their patient organizations
  • dedicated Slack group where all the participants exchanged experiences, ideas and shared their successful campaigns in the area of patient advocacy
  • 2 Zoom meetings where participants had occasion to discuss specific issues related to treatment access, public policy advocacy and awareness.

The course was also complemented with a grant competition. It was an opportunity for PAG’s leaders to win an unrestricted donation for their activity.

Participants’ skills assessment

We conducted a survey among the participants before the start of the course and after the end to compare results and observe the outcomes of the workshop. The statistics show that the assessment of all skills listed in the survey increased. The overall skills assessment before the course was 6.1 (on a scale of 1 to 10) while after the course – 7.9. That’s a 30% increase. ​​​​​

Opinions about the course

The participants assessed the course very highly – general evaluation was 9.3 (on a scale of 1 to 10). The choice of the subject was evaluated at 9.7, interesting way of presentation - 9.3, while the usefulness of the information – 9.5. Discussion on the Slack group received 9.3 and live meetings on Zoom - 9.0.

“PatientAdvocacy.Academy was very educational and interactive for me. I’ve learned many new things about advocacy and ways of expanding my home patient organization’s activities through different projects.”​​​​​​​

Vida Ramšak Marčeta, Slovenian Association for Children with Immune Disorders
“This was by far the best training I've ever received. It was packed with practical and useful information based on the personal advocating experiences of the Patient Advocacy.Academy team. (…) Really a great training course!” 

Uroš Brezavšček, Slovenian Association for Patients With Bleeding Disorders “Krvni Bratje”