PatientAdvocacy.Academy 2022
Special edition of the course – dedicated to Global Challenges – has been designed in response to the most urgent challenges faced by patient advocates in Europe.
Why are Global Challenges the main topic?
Recent years, months or even weeks have brought patient advocates – especially those operating in the area of plasma-derived products – many challenges.
- First, we experienced the COVID-19 pandemic which strongly affected the healthcare systems in different countries, access to treatment and appropriate diagnostics, as well as the approach to patients with rare diseases.
- Also, drops in plasma donation caused by a pandemic resulted in shortages of medicines for patients who are fully dependent on them.
- In some countries there are already temporary drug availability problems, in others the pandemic has become an excuse to cut back on spending on rare disease patients.
Moreover, in February, Ukraine was attacked by Russia and the war began - the first such large armed conflict since the Second World War. The war had an obvious impact on Ukrainian rare disease patients, but also on healthcare systems across Europe
We decided it was time to look at these challenges and start discussing them to see what action we could take in terms of advocacy and patient education.
Therefore, during PatientAdvocacy.Academy 2022, we took up all relevant topics from the PAG perspective in the context of Global Challenges, such as access to treatment, vaccinations, online education and plasma awareness. We initiated the exchange of experiences and developed solutions that will help to effectively meet the needs of patients in the near future.
One Academy, many different activities
Again we decided to design a 21-day program containing various activities. The first days were dedicated to introducing the topic and getting to know each other better on the Slack group.
Then we provided 10 video lectures covering most important topics, supported by discussions on Slack, and team work during live sessions. For each video lesson, additional educational materials were prepared, which allowed participants to consolidate their knowledge and immediately translate it into practical solutions for their patient organizations.
There were 3 online video conferences – coaching circles – where participants exchanged their view and experiences on the proposed topics in order to find solutions to their own obstacles.
The course was also complemented with a grant competition. It was an opportunity for the participants to win an unrestricted donation for their activity.
Highly effective patient advocates – even in the face of challenges
We gave participants resources to make their actions even more effective, more spectacular and more visible. The course provided the participants with the opportunity to:
- Gain knowledge about the long-term impact of the COVID-19 pandemic on patients
- Receive knowledge about plasma donations and PDMPs
- Gain knowledge how to effectively fight for an access to treatment
- Find out how to improve comfort and take care of newly diagnosed patients
- Learn how to start preparing valuable podcasts and video materials
- Learn how to prepare interesting meetings and conferences for patients
- Get to know how can we support Ukrainian patients in the long-term perspective
We conducted a survey among participants after the end of the Academy to hear about their experiences and how they evaluate various aspects of this year's edition. Once again the participants rated PatientAdcocacy.Academy very highly.
“Thank you very much! It was very interesting and useful. We got a lot of new ideas for our patients, website and volunteers.”
opinion from the survey
“Everything was incredible, and I learned many things, especially it was a bit challenging for me to do the practice pages, but so fun!”
opinion from the survey
If you want to learn more about PatientAdvocacy.Academy 2022, please click here to check our report in the PDF file.