For this episode of Karger’s The Waiting Room Podcast, we spoke with Anca Toma about the 20th anniversary of the European Patients’ Forum (EPF) and its future goals. Anca Toma joined the EPF as Executive Director in March 2022. She has over 15 years of experience in European health policy, working in policy advocacy, strategic communications, developing and coordinating successful pan-European advocacy campaigns.

The EPF is the leading voice of patient organizations in Europe. 20 years after its founding, EPF occupies a unique position as the only cross-disease umbrella patient organization at the European level.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

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Transcript

Welcome to The Waiting Room, Anca.

Thank you. Thank you for the invitation, Susanne.

You are very welcome, and I think we start with the first question. I would like to know, what is the European Patients’ Forum, as I said, also known as EPF, and what have been EPF’s biggest achievements during the last 20 years?

Two very big questions. I will start with the first one, and I think I will give a slightly personal perspective on it. What is EPF? Well, we are the umbrella organization of umbrella organizations of patients, and we were founded and we work on the principle of nothing for patients without patients. So, we strive to collect, represent, and defend the collective voice of patient organizations and through them of their constituencies of all patients in Europe. That is 150 million people in Europe living and working and operating and moving around with chronic diseases.

So, as such, we aim to be the collective voice of patients in Europe. We look after the areas that serve the interests of all or most of our members as much as possible. We work with our members to put together a collective response and a collective voice and we aim to represent really, truly. Now the achievements of the first 20 years: I think creating and developing an organization such as this is an achievement in itself.

You are absolutely right.

Achieving this representative nature and this representative vocation of the organization and maintaining it for 20 years is no small feat. So, the nature of the EPF, I would say, is the first achievement. But, of course this is the big stuff, but it’s built on a lot of bigger and smaller pieces of work, things that took a year or ten, that builds that community as it is. So, I’m going back to the discussion that we had at the anniversary event a week ago. And I will draw a few of the comments from some of our, how do I call them, elders – I don’t think they will appreciate being called this. You know, the state figures that helped create and steer EPF in its early years and through the years, indeed.

So, I would start, now I have a few notes here. The democratic nature of EPF, the way we operate, setting up the consultation structure, working with our members and developing the way of working that is truly member-led in our organization, that’s something that stood out for our former Secretary General, Nicola Bedlington. Another achievement that was highlighted during the event came off from a former policy maker, and that was the transformative nature of such a large representative organization that helped shape the European healthcare advocacy ecosystem. That’s obviously very important, because here we are, we’re based in Brussels, and we work on the regional issues, on the EU issues, on the European issues. And building that structure for advocacy is also extremely laudable.

Our former president, Anders Olauson, highlighted the way that EPF was able to make things happen. Now getting things done is not an easy thing, especially when you represent dozens and dozens of members. But we’re able to collect that experience and knowledge from our members and put it to work. And that’s something that, I mean for me and my ethics, is, it resonates very well because getting things done is what keeps us going, right.

And not least an example that came from a former board member, Maria Navarro from Spain. She was and is involved with the Spanish Patients’ Forum, a national organization. It was the aspirational value of EPF, and how it then inspired the creation of umbrella organizations representing all patients at the national level, and she said something about having an older sibling, something to emulate. And that comes out a lot. And it’s happening still today, that we have inspired the creation of national umbrella organizations. So that’s a bit of a long-winded way of answering your question, but it’s something that we’re very, very proud of.

I can completely understand this, and I like the comparison of EPF being like an older sibling going forward and inspiring. And what I find amazing, when you said it’s this “Nothing about us without us”. When you started 20 years ago, this was, I think, quite a new thing. Now it’s like a slogan everybody repeats and thinks “Yes, this is the right way to do things.” But 20 years ago, this must have been like a revolution.

It was, I mean, you have to look at, you know, the history of patient engagement and the involvement of patients in health care. And we started from a very paternalistic perspective where patients were subject and not more than that, you know, follow the doctor’s orders. And the revolution that started with, not just with EPF, but with our founding members, was that patients became interlocutors, they became core participants in their own care. And that, you know, that brings me to an aspiration for the future, which is that patients become co-creators of health and health care for themselves and their communities.

They have to be taken seriously, because they are the experts on their condition. Expert patient is one other expression. But, so I hear, at this year’s anniversary congress, you had a few older members, as you said, we just call them older members now, and they look back on what they created and what people are doing now. So, my second question would be what were the highlights of this year’s congress, and have you planned other events in the success of 20 years of EPF?

Let me start with the highlights. I think the discussion between our state elders was probably one of the best parts. You don’t have to be old to be an elder. I have to say that, because it’s important. And the spirit is, it is just so inspiring in them. So, one of the highlights was this discussion about how EPF lived up to the promise that it was set out to deliver.

We also had very interesting discussions about the achievements to date from the perspective of our main pillars of work: the capacity building, the working with our members, and building their representation capacity. From the point of view of policy and what we’ve achieved in the environment in the EU, and at the regional level, and from the perspective of our engagement with stakeholders through projects and through our work to put patients forward as part of European initiatives.

And that eased very nicely into a discussion about what we want to achieve in the next ten years. And we said ten because we want to be ambitious and because things are moving at a very different pace, and because we have this critical mass now. And some very ambitious ideas came out. And at the end of the meeting, of course, we unveiled a manifesto for patient organizations’ involvement. We also want to add the element of organized patients to the element of – you said “expert patients” – of patients being involved. We want to talk about the communities as well and how that democratic process is being reflected in policy, in practice, in health care in general.

Do we plan other events in 2023 to celebrate the 20 years? No, we will celebrate with work because we have a manifesto and it needs to be put into reality. So, our work this year is about, what I said before, making things happen, getting things done.

So, this manifesto for the next ten years, where can it be accessed? Is it on the website of EPF?

We’re polishing it up and putting it on the website in the shortest delays possible.

Okay. Maybe when the interview’s out we already have it. I will put it then in the show notes and if not, I would encourage everybody to have a look at your website and look for the manifesto for the future.

It will be on the main page, I promise.

Very good, okay. So, we talked a lot about the state elders, as you called them. And I, when I went to Brussels to your congresses, I was impressed by the power of your youth group. So, I want to ask you, what role does the youth group play at EPF and what are their plans for the future?

The youth group? Well, EPF has one of the oldest youth groups in the patient community. Oldest, you see oldest running. We have a history of working with the youth group. And it was a few years ago that we elevated the role of the youth group by assigning a board of membership spot to the youth group. So, there is an additional element of democracy because there are elections for that as well. It is integral to the EPF’s mission that we have a youth group. This is because this group was created with the mission of training the future leaders of patient advocacy. We are working with these amazing young people and integrating them in our activities.

And this allows us, first, it benefits EPF, because we integrate the voice of younger patients, and then it helps them, because it integrates them into a movement and it provides professional training for their future, for their future careers should they choose to have careers in patient representation and patient advocacy. And this is with the overall ambition of creating the leaders of patient organizations in the future, people who will already have gone through the hoops to learn and to learn by doing. So, yeah, they’re very important.

Yes. And it’s again, like the older siblings. So, the people, the older people, I think this is a running theme here in this interview.

But the point is, I don’t want to talk about, you know, age is only a number.

I know. Yes. But still, the youth group, I was so impressed when I encountered them, how they led through the program, what role they played. And I never found it in any other patient organization. I never saw such a strong youth group. So, that was really impressive. And I like this a lot. And that was a spirit that sprang to the audience, in my opinion.

Yes. And, you know, and that energy, it’s … I don’t necessarily perceive that there is a different level or nature of the energy and drive between the various generations in EPF. And that’s quite amazing. The energy, that drive, the passion is the same. What’s really important for me is that we bring the different voices across generations, because, well, they’re equally important from a moral standpoint, but also from the perspective and the different challenges of living with conditions for shorter, longer, and the guidance that one generation can provide to the other, and the reminders that one generation can provide to the other and the different learnings from different stages.

I agree. It was a kind of interaction, but you gave them a platform, so they could rise and shine. And I really like that. Anca, now a kind of personal question is, as EPF’s Executive Director, what have been your personal highlights in the first year of your term, and what do you want to achieve?

Oh, oh, a personal question. So, I’ve been in EPF for 15 months now. I’ve survived two major events. You know, there’s a lot of work going to prepare them. I think the first highlight is the way we are working on building the team that serves our membership. We are here, you know, we have a very strong secretariat, a very inspiring team. We’ve had quite a few additions in the last year since I joined and it’s been a highlight for me to see it take shape, and to contribute to it taking shape.

Another highlight has been to get to meet our members. And we had, this year we had the first annual general meeting in person since COVID. So, it has been an absolute honor and pleasure for me to be in the same room with these men and women and to have that personal interaction and to get to know them. Because it was quite obvious from the beginning when I joined that it’s an outstanding community. But to actually see them in action in person, it is a complete different level of all. So that’s been a highlight as well.

And yeah, I think it’s, it’s the … for me as a person and as a professional in growing it’s been an education to absorb the perspectives of such a diverse community with such diverse needs and the humbleness of putting ourselves at the service of this community, it remains very inspiring.

So very good. You are part of the community and you’re looking forward to further serving them. So that would be your special personal ambition.

It is. It is. My goal is to keep growing myself and the team, and to keep developing our skills and abilities to deliver the promise that we made together a week ago and put that manifesto out to real, you know, to real work, and transform it into reality.

Thank you very much. That was such an inspiring discussion. Thank you for your time and your insight, Anca.

Thank you, Susanne.