Becoming a patient advocate has been a transformative journey for me. Over the past decade, I have had the privilege of participating in various initiatives and training programs that have deepened my understanding of medical research and patient advocacy.
It all started with a simple “yes.” Ten years ago, I agreed to join the Rudy Study as a patient advisor. Although I had no prior experience, I was eager to contribute. My role involved participating in video calls and offering my perspective as a patient. This experience taught me the importance of patient input in research. For instance, I raised questions about data collection and patient engagement that helped make the study more collaborative. At the end of the day, nothing about us without us?
My second yes was in 2018 when I did my first training session with the European Patient Forum in Vienna. This was a summer training programme for young patient advocates and that is what got me hooked on the opportunities we have as patients that can shape our future. This was quite generalised training for patient advocates in various settings, however I was drawn into the medical research world.
Over the next 10 years I’ve taken an interest in getting involved in research ‘behind the scenes’. I’m quite curious how research is considered and all the different types of research that can be done, whether that be a medicine research project that involves a placebo, comparing a new drug to existing treatments or simple surveys that help build a bigger picture of what is actually going on within in our community.
I was then invited to join the scientific advisory board with the BBS. This was another deep jump as I was now looking at proposals for small funding opportunities for research and I’m having to learn even more about research, learning lots of acronyms and the ethics of research. This can feel daunting however the team were amazing and anything I’m not sure about I feel very comfortable asking questions. Until last week, I still felt a little over my head. Perhaps I always will however I feel like the most recent opportunity I said yes to has taught me so much and my confidence has grown.
My most recent yes was with the Eurordis – Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. They have an open academy with various online training and in person opportunties. I signed up for free training in Barcelona on their Medicine Research and Development training course. It was quite a big commitment of 18 hours of online learning then a 5 day in person training course where we had a variety of inputs from people across Europe. It was an incredible experience and I think my brain is still hurting from all the information we received. Our course gave an overview of therapeutic development, clinical trials, the European Medicines Agency and Health Technology Assessment, drug repurposing and patient engagement and how to take action.
During the course we had the privilege of visiting Sant Joan de Déu Barcelona Hospital (SJD) and Vall d’hebron institute de Recerca (VHIR – biomedical research, innovation And Teaching). The children’s Hospital (SJD) was the most incredible hospital I’ve ever seen. It didn’t feel like a hospital and its all been purpose built. The kids have a slide next to stairs they can go down, accessible play areas all over, screens on the lift ceiling to make you look like you’re swimming with turtles. Everything was so relaxing and it didn’t feel at all clinical. We visited key places within the hospital which included the cancer unit, neonatal unit, the labs and the command centre. Each one as breathe taking as the next and the amount of technology they use to make it run seamlessly is incredible. The VHIR which was a research area attached to a hospital was just as fascinating. We saw some labs and spoke a lot about research into various medical conditions, viruses etc was mind blowing.
It felt like such a comprehensive course and I’ve come back excited to get stuck in as a patient advocate. I was also really lucky to have been doing the course with 3 other Oi’er from other countries. It was interesting comparing stories but most of all our common goal and how lucky we are to have well established patient groups that are proactive in working together. I’m hoping to do their other in-person course next year on Scientific innovation and translational research.
If you’re interested in becoming a patient advocate then please feel free to reach out to the BBS who can put you in contact with me and I can share my experience so far and what I’m involved with. Perhaps say yes and see what opportunities come your way as I could never have imagined half the things I’ve done because of it.
