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 don’t have enough knowledge and experience to face 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

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

Training 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 an opportunity to discuss the topic on a special closed group. The course ended with a special live Q&A session and a live summarizing session. Participants could resolve their last doubts and get extra tips. All the materials were available for the participants on a dedicated e-platform 24/7, also 6 months after the course.

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

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

First edition – impressive results

The overall skills assessment, according 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. It’s a 35% increase of their own skills assessment.

The participants assessed the course very high – general evaluation was 8,5 (on a scale of 1 to 10). The choice of subjects has been evaluated 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 was no other answers!

PatientAdvocacy.Academy – second edition

Public policy advocacy was 2019's topic. It is one of the most demanding and complex area of activity of patient organizations. It was clearly visible in results of our survey form the first edition of the Academy. Fields of activity related to policy advocacy were indicated as the most tough ones.

Participants had a chance to learn:

• how to prepare a detailed plan of a public policy campaign
• how to recruit powerful allies from different environments: politicians, celebrities, social media influencers and physicians.
• what is a proper timing of such activities: when to send official writings, when to start attracting media or announce a success
• how to engage themselves in a longer advocacy processes

In the second edition, the course’s formula was a little bit different from the previous one. Taking into account the participant’s feedback, we decided to design a 14-day course with longer videos. So the overall time of the video material stayed the same, but we serve it in a more condensed form. There were also 3 online video conferences – coaching circles – where participants exchanged their views and experiences on the current topics of the course in order to find solutions of their own obstacles. It was also a time to ask all the questions to the trainer.

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

Participants' assessment of the second edition

We conducted the survey among participants after the end of the course.

The participants assessed the course very high – general evaluation was 9,6 (on a scale of 1 to 10). The technical aspect has been evaluated 9,0 while the usefulness of the information – 9,5.

Moreover, the participants were asked if they would like to attend a course like this in the future. 80% of them answered “Yes”, while 20% “Rather yes”. There was no other answers.

“The relevance and quality of the information is excellent. Also it is good to have real life examples of how some of the theory worked. I particularly liked the modules on running a campaign and dealing with a crisis. The modules are very well thought out and presented very well.”

opinion from the survey