PatientAdvocacy.Academy – trendy answer for real needs

The first edition of PatientAdvocacy.Academy was addressed to PAG representatives acting in the area of plasma-derived products. These extremely engaged people face many obstacles: they often lack sufficient knowledge and experience to face the complicated, unfriendly and bureaucratic world of healthcare laws and policies. We wanted to give them practical knowledge on patient advocacy – effective tools, procedures and best known solutions.

PatientAdvocacy.Academy – first edition

The first edition of the PatientAdvocacy.Academy took place in June 2018. The course was focused on:

• developing a professional NGO and building a team of engaged volunteers
• effective public policy advocacy
• efficient fundraising and creating financial strategy
• building relations with media, doctors and other stakeholders

The workshop lasted 21 days. Every day participants received an access to a new video (lasting about 15 minutes) and a short exercise which helped them to practically implement gained knowledge. They also had the opportunity to discuss the topic in a special closed group. The course ended with a special live Q&A session and a live summary session. Participants could ask any questions they still had and get extra tips. All the materials were available for the participants on a dedicated e-platform 24/7 and for 6 months after the course.

In the first week, participants got to know how to manage a patient organization and how to plan its activities. In the second week, we drew their attention to patient education and effective patient advocacy. In the third week, they learned how to effectively collect funds for activities, as well as how to use social and conventional media to achieve goals.

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

First edition – impressive results

The overall skills assessment, according to the self-report of the participants, before the course was 5.8 (on a scale of 1 to 10), while after the course – 7.8. That's a 35% increase in assessment of their own skills.

The participants also assessed the course very highly. The general evaluation was 8.5 (on a scale of 1 to 10). The choice of subjects was evaluated at 8.8, while the usefulness of the information – 9.0.

Moreover, the participants were asked if they would like to attend a course like this in the future. 66.7% of them answered “Definitely yes”, while 33.3% “Rather yes”. There were no other answers!