The European Patients’ Academy (EUPATI) was established in 2012 as a pan-European project. It is a programme that provides education and training to patients and patient representatives to increase their capacity and capability to understand and meaningfully contribute to medicines research and development (R&D), and to improve the availability of medical information for patients and other stakeholders. It does so by conducting its established Patient Expert Training Programme which has, until today, trained more than 200 Patient Experts, the so-called EUPATI Fellows. Livia Nagy, founding member of the Hungarian parent organisation Melletted a Helyem Egyesület (Right(s) beside you) and EFCNI Parent Advisory Board Member has successfully completed this demanding programme and can now count herself among the EUPATI Fellows. We wanted to know from Livia what made her decide to do this programme and how she wants to use her qualification in the future.
How did you learn about EUPATI training and what were the reasons why did you apply for this training?
I even remember the exact date I first heard about the EUPATI training; Nicole Thiele, our coordinator of EFCNI PAB mentioned the training during our annual meeting in 2017, as she started the European Patient Academy and highly recommended it to all of us, who were implicated in advocacy and interest working close to healthcare professionals. Since I had been working as a paediatric nurse myself, I found it interesting and wanted to expand my knowledge in this field.
Was there anything you found particularly challenging or difficult? What was particularly motiving or inspiring for you?
It is a big commitment from day 1 till the last minute of the training. It starts with the application process and I was almost 100% sure I’m not going to be selected for the training, as the “patient” is not myself, and as I heard later the very limited number of patient representatives are applying from the maternal-newborn health field. I was so proud Id been selected and not only a lot of commitment but you need a lot of time and a QUIET environment, which is very limited in my household. Not to mention the Covid-19 pandemic arrived and I had to study during the night while my children were sleeping. 15 months of training in English-which is not my mother tongue made it more complicated. But it is rewarding and I met fantastic patient experts from all around the world and our trainers were highly prepared and committed tutors, whom we could learn a lot and count on during the whole training.
What would you like to achieve as an EUPATI fellow in the future?
I do believe that the more informed parents are the more competent with their babies throughout the whole NICU journey. I would like to give more support to the parents to make the right choices and advocate successfully for their babies. Also to help and dialogue with clinicians to be the voice of the babies and their parents to prevent bad and outdated practices. Influence regulators to make sure they are founding and making their decisions on patient preferences and contribute in research projects to help clinicians to put the “good” questions in their hypothesis, to have the relevant and useful outcome of the research to help the patients in real-life settings.
Would you have any recommendations for other patients if they are interested to represent the patient voice in research projects?
Get involved, start the training today, as the application process is changed and the whole training is online-based now. Everything you’ll learn will make you more confident while you advocate for your fellow preemie parents and their babies. You’ll be heard if you are doing evidence-based advocacy, so you have to learn the “language” and the clinicians, researchers and policymakers will open their door for you and let you in their world. They need patients, and our experiences as the future of healthcare are patient-focused care. “Nothing about us without us.”
Thank you, Livia, for your time and for sharing your experience and advice with us.
To learn more about EUPATI, visit https://eupati.eu/