Maarten Kraaijenhagen, Senior Medical Director Rare Disease with Pfizer and PARADIGM member interviews Marzena Nelken, board member of the EPF and Project Manager with the Federation of Polish Patients
Maarten: How did you end up working for EPF?
Marzena: Well I’m coeliac myself but it all started when my sister was born with the condition phenylketonuria (PKU) 30 years ago; at that moment it was quite challenging in Poland because we didn’t have any information or any proper access to treatment and there was a very strong need to build a group of parents to support each other and exchange information/experiences. My parents did this; they connected with other parents of children with PKU and started a movement. I was observing how this was developing and then I started working as a volunteer in the Polish PKU and Rare Disease association “Ars Vivendi” where I learned a lot. Within the time I extended my activities to other diseases, so I joined the Federation of Polish Patients, which is the umbrella organisation of patient organisations in Poland having over 100 members. Currently, I am a project manager there, taking care of international, European and local projects as well. In the meantime, I completed the European Patients Academy on Therapeutic Innovations (EUPATI), led by EPF. This is a very intensive 15-month-course in medicines research and development, and it has provided me with a lot of knowledge. It gave me a great overview on how everything works when it comes to creating new drugs.
Maarten: You attended the PARADIGM Patient Engagement Open Forum in Brussels in September 2019. What did you think about the Forum and what are your key takeaways?
Marzena: I was happy to see so many representatives in pharma and academia there next to patient representatives and I was really happy to see that there are people that seem to be very enthusiastic to work with patients, which is not always the case on a national level. They seemed to really understand that it’s crucial for all of us, for all stakeholders, to have patients there, to have their voice, because it’s the only way we can develop all of us.
Maarten: What do you think about the changes that are currently taking place in patient engagement in Europe? Do you see any changes in patient engagement practices?
Marzena: Yes, the patient movement has become much stronger, we have started to join forces, to unite on both a national and European level. And I am very happy to see this integration process, which sometimes is challenging because of the variety of needs in different diseases, because of political differences in member state countries in approach to health policy or money spent on health.
Maarten: If you are looking at the changes that have already taken place, what are the most positive ones have you seen over the past years?
Marzena: I would say the single most important thing is the fact that more and more people are beginning to understand that patients should be part of the decision-making process. I think that this has been the most important step forward so far. The patient is really important from all different perspectives.
Maarten: So, if you were to give one piece of advice to patient organisations on the collaboration with other stakeholders like pharma or academia, what would that be?
Marzena: The most important thing would be to integrate all these communities, to really find common interests, common goals and then to interact with other stakeholders, because small organisations are often not able or capable to raise their voice in order to reach their goals. I believe that patient organisations can and should stand behind each other to support each other.
Maarten: If you were to give one piece of advice to stakeholders like pharma or academia on how they can better collaborate with patient organisations, what would that be?
Marzena: Well, I think that at least on the European level these stakeholders already believe that patients are needed, and they say that many times. I think there is a lot of space to collaborate, to exchange opinions. By setting common goals, I believe that it is possible and really very much probable that we will create a great collaboration within these three stakeholders. It’s happening right now, and I really believe it’s possible.
Maarten: How do you see that the outcomes of PARADIGM could potentially help the EPF in achieving their mission?
Marzena: Well, PARADIGM is an Innovative Medicines Initiative-funded project with the mission to enable the co-creation of a sustainable framework allowing systematic, meaningful and ethical patient engagement in medicine development. So by its very nature, it’s a part of our mission. In the EPF’s strategic goals we have both patient involvement (in the development and implementation of health-related policies, programmes and projects in the EU) and patient empowerment (EPF promotes the development and implementation of policies, strategies and healthcare services that empower patients to be involved in the decision-making and management of their condition according to their preference, whilst raising awareness about their rights and responsibilities).