From Lived Experience to Lasting Change: Building Better Neurology Together

As the European Federation of Neurological Associations (EFNA) celebrates 25 years of advocacy, Sam Pauly is joined by Dr. Orla Galvin, Executive Director of EFNA, which serves as the Secretariat for the OneNeurology partnership. Together, they explore how advocacy for neurological conditions has evolved, why collaboration is essential to making neurology a global health priority, and how early and meaningful patient involvement is helping shape better research, policy and care. The episode also features Astri Arnesen, who shares how persistence, partnership and lived experience—including her own family's experience of Huntington's disease—have helped transform advocacy for people living with neurological conditions.

The One Voice for Neurology podcast with Sam Pauly is produced on behalf of OneNeurology, a global partnership bringing together neurological organisations, clinicians, researchers, patient advocates and industry suppporters to make neurology a global health priority. 

To explore OneNeurology's work and find out more, visit https://oneneurology.net/

Transcript

Dr Orla Galvin (00:07):

None of us can solve these challenges alone. Policymakers create the environment for change. Healthcare professionals bring the clinical expertise, researchers drive the innovation, and patient organizations contribute the lived experience that ensures those solutions actually meet people's needs.

Sam Pauly (00:30):

[00:00:30] Welcome to One Voice for Neurology with me, Sam Pauly. In this podcast, we explore how we can make neurology a global priority, how that can be achieved through a unified approach, and what that means for the future of neurology and people living with neurological disorders. Today, we're focusing on one of One Neurology's founding partners, the European Federation [00:01:00] of Neurological Associations, or EFNA. As EFNA celebrates 25 years of advocacy this year, we'll be talking about what they've learned, what they've achieved, and what the wider neurology community can take from their experience. And to do that, I'm delighted to be joined by Dr. Ola Galvin, Executive Director of EFNA and Secretariat of One Neurology. Ola, thank you so much for being with us today. Welcome.

Dr Orla Galvin (01:23):

Thank you. Thanks for having me.

Sam Pauly (01:25):

So as I mentioned in the introduction, Oler, it's 25 years of advocacy for [00:01:30] EFNA. It's a long time in advocacy. What's been the biggest change, do you think, in how neurological conditions are recognized by policymakers over that period?

Dr Orla Galvin (01:38):

Yes, we are indeed celebrating EFNA's 25th anniversary this year. And I suppose one of the biggest changes has been that there is a growing understanding that neurological conditions are not so niche and not so rare when it comes to the issues that they present. [00:02:00] Collectively, we know they affect millions of people across Europe, and they represent one of the leading causes of disability and have a profound impact not only on individuals, but also on families, on healthcare systems, and society as a whole.

Sam Pauly (02:17):

So have we moved beyond thinking about individual diseases then and towards brain health?

Dr Orla Galvin (02:23):

Yes, definitely. What we've also seen is an important shift from thinking about individual [00:02:30] neurological conditions in their own isolation towards the broader concept of brain health. And I think that has been incredibly valuable, really from an awareness and an education perspective, because it helps people understand just how fundamental brain health and neurological care is to every aspect of our lives. At the same time, it is important that neurological conditions don't become lost within that broader conversation. [00:03:00] Brain health is an umbrella concept, and that rightly includes areas such as mental health and psychiatry. And we've seen tremendous progress in awareness and investment and political attention in that field over recent years. But with that comes a challenge, and our challenge now is to ensure that neurological conditions receive that same level of recognition, investment, and policy focus. It shouldn't be a choice between brain health and neurology.

(03:30):

[00:03:30] We need both. And a strong brain health agenda should strengthen the visibility of neurological conditions, and of course not diluted in any way.

Sam Pauly (03:40):

And is that the biggest challenge or are there other challenges as well?

Dr Orla Galvin (03:44):

Looking ahead, I think the biggest challenge is no longer convincing policymakers that neurological conditions matter. There is a body of evidence there, and that evidence is growing, and that is very much supported by data [00:04:00] generated by patient organizations. The challenge is translating that recognition into real improvements in people's lives through earlier diagnosis, equitable access to care, investment in the neurological workforce, in rehabilitation, and in research and innovation. We have made enormous progress over the past 25 years, but the next chapter is about turning political commitment into real, meaningful action [00:04:30] for everyone living with a neurological condition.

Sam Pauly (04:33):

EFNA has achieved so much over the last 25 years, and one of the things it's, I'm sure, incredibly proud of is One Neurology, and One Neurology is about making neurology this global one global priority. So from EFNA's experience, what has made advocacy most effective when organizations work together rather than separately?

Dr Orla Galvin (04:53):

One of the biggest lessons we've learned is that policymakers don't just listen to the loudest voice. [00:05:00] They listen to the most unified voice. And when patient organizations, clinicians, researchers, and national governments are all delivering the same message, it is much harder to ignore. And that's really the philosophy behind the One Neurology partnership. No single organization, regardless of its size or influence, can represent the full breadth of neurological conditions or solve these challenges alone. But together, we can demonstrate [00:05:30] both the scale of the challenge and the shared solutions that are needed. And that last point is really important.

Sam Pauly (05:37):

And have you an example that you could share with us where collaboration has achieved something that no single organization could have done alone?

Dr Orla Galvin (05:45):

I'm so glad you asked that because a great example from this year was our official side event at the World Health Assembly in Geneva. Through the One Neurology Partnership, three international patient organizations worked together with a member state to secure the [00:06:00] opportunity to host the event. That's something that would've been extremely difficult, if not impossible, for any single organization to achieve on its own because of the way these international processes work. And what made the event particularly powerful wasn't just that we were able to organize it. It was the level of engagement that it generated. Multiple member states supported the initiative, attended the event, and spoke about the urgent need to improve brain health and neurological care around the world. [00:06:30] It created a platform where governments, patient organizations, and other stakeholders could have a shared conversation about implementing the WHO's IGAP. So that's the intersectoral global action plan on epilepsy and other neurological disorders, and turning global commitments into national action.

(06:47):

We're really proud of that.

Sam Pauly (06:49):

Well, congratulations on that. And actually, we are going to have a later episode this series talking to the WHO as well. So we'll be hearing more about the IGAP then. Are there examples, Oula, from Europe that [00:07:00] the rest of the world could take when it comes to advocacy policy or patient involvement?

Dr Orla Galvin (07:06):

One area where Europe has made significant progress is in patient involvement in research. Increasingly, patients are no longer seen simply as participants in research. They're recognized as partners in shaping it and not just in work package four or five where the deliverable is in dissemination of the outputs. [00:07:30] A great example is the European Partnership for Brain Health, which officially launched this year in January. And over the next several years, so the next seven to 10 years, it will invest around half a billion Euro in brain health research across Europe. And EFNA works closely with partners to advocate for meaningful patient involvement from the very beginning rather than treating it as an afterthought. What this means is that patients are involved not only through patient [00:08:00] and public involvement activities, but also critically as lay reviewers of the submitted research proposals and through a dedicated patient advisory board, which sits alongside the scientific advisory board.

(08:13):

And that's a really important milestone to achieve because it helps ensure research reflects the priorities and lived experiences of the people it's ultimately designed to benefit. Of course, there's still room for improvement. The fact that we had to advocate so strongly for those structures [00:08:30] does show that meaningful patient involvement still isn't as automatic as one day it will hopefully become. But I do think that Europe is helping to demonstrate what good practice can look like.

Sam Pauly (08:41):

And conversely, could Europe learn something from other parts of the world?

Dr Orla Galvin (08:46):

There's a lot of competitiveness indeed, but at the same time, yeah, Europe has plenty to learn from the rest of the world. Many countries have developed innovative community-based care models, stronger public awareness campaigns, [00:09:00] and different approaches to engaging diverse patient communities. I suppose rather than asking who does best and picking a country as an exemplar, we should probably think about how we can learn from one another and adapt successful ideas into different healthcare systems and cultures.

Sam Pauly (09:17):

And what would you say that looks like? Better sharing good ideas, collaborating across countries and regions. How do we do that better?

Dr Orla Galvin (09:25):

We need to move away from talking within our own professional networks. It's easy [00:09:30] to get caught up in the bubbles. So some examples would be conferences, international partnerships, and podcasts like this are incredibly valuable because they connect with people across borders, but we also need to reach wider audiences too. And mainstream media and public engagement are really good approaches there. The more we share the successful approaches and the challenges we've overcome, the faster we can improve outcomes for people living with neurological conditions.

Sam Pauly (10:00):

[00:10:00] Let's talk a little bit more about patients as partners, all of which you've already touched upon. EFNA has of course long championed patient involvement. Has patient advocacy changed over the past couple of decades?

Dr Orla Galvin (10:15):

Patient advocacy is one sector that has evolved enormously over the past two decades. 25 years ago, much of it was driven by passionate volunteers working with very, very limited resources. While [00:10:30] volunteers remain at the heart of many organizations still today, patient advocacy has become increasingly professional, very strategic, and very influential. Organizations like AFNA are now recognized not simply because we represent patients, but because we bring expertise, evidence, and practical solutions to policy discussions.

Sam Pauly (10:55):

Can you share any examples where patient voices then have genuinely made an impact, change policy or perhaps [00:11:00] clinical practice?

Dr Orla Galvin (11:01):

Yes. The biggest change has been a shift from seeing patients as the recipients of healthcare to recognizing patients as genuine partners in shaping it. Today, there's much greater understanding that when patients are involved meaningfully, the outcomes are more relevant, more practical, and ultimately more impactful. We've seen some excellent examples of this, most particularly with [00:11:30] our clinical counterparts, the European Academy of Neurology. The EAN has been our real leader in embedding patient representatives within its task force, its guideline development groups, and in policy initiatives. That means patient perspectives are considered from the outset rather than being sought at the end simply to validate decisions that have already been made. We also see encouraging progress in research where some countries and organizations now recognize the value [00:12:00] of patients' time and their expertise by reimbursing them for their contributions. And that's an important cultural shift because it acknowledges that lived experience is a form of expertise in its own right.

Sam Pauly (12:12):

Well, Ola, you've been talking about the importance of listening to lived experience and how that's an area of expertise to be incorporated. So let's take a quick moment now to hear an example of that in action. As we hear from Astri Anison, who is the CEO and president of the [00:12:30] European Huntington Association, president of EFNA, and a member of a Huntington family.

Astri Arnesen (12:41):

My name is Astria Anderson, and I've been involved with the Huntington community since my mother got the disease back in the 1980s. Huntington's disease is a neurodegenerative, hereditary, and very complex disease. And there is really a need for specialized care and [00:13:00] support. And that was completely lacking back then in the '80s. And I got engaged with the patient community and the patient organization because we needed to make a change, to be the change we wanted to see. So we advocated towards politicians and healthcare providers and pointed to how they should establish specialized care homes to be sure that the staff had that expertise needed. And it took forever. It took many years, but [00:13:30] we didn't give up despite changing governments when you had to start from scratch again. We did succeed and these care homes are now in place and have been for 15 years or more.

(13:42):

And the situation for families has changed. It is easier to get access to experts who knows what the disease is about, much easier now than it was. Nevertheless, there are many things that we need to still work with. And I think successful advocacy is about [00:14:00] being, of course, persistent, but it's also about building alliances with the people you should join forces with being rare diseases, neurological diseases, or people you see that are resources and that want to join your struggle to improve the situation. My experience is that through collaboration, your message gets much stronger. It really helps when decision makers hear the same ask from multiple stakeholders. And I really feel there is a momentum [00:14:30] now for neurology. And I hope that we under the neurology umbrella can join forces and speak with one voice to improve healthcare for patients.

Sam Pauly (14:46):

Astrianis in there. Ola, both you and Astri have spoken about the importance of listening to the voice of lived experience, but are there organizations that still struggle to involve patients effectively? And [00:15:00] what advice would you give to organizations that do face that challenge?

Dr Orla Galvin (15:04):

Yes, this unfortunately is true. There are still organizations that struggle with patient involvement. I suppose my advice would be quite simple. Be to start early, involve patients as equal partners, not as final consultation exercises. Meaningful involvement isn't about asking for feedback once decisions have already been made. It's about inviting patients into the conversation [00:15:30] from the very beginning, listening to their perspectives, and being prepared to act on what you hear and what you learn and to be prepared to learn. In my experience, I've never ever come across an organization that has really genuinely embraced meaningful patient involvement and had any regrets. It's always been the absolute opposite. In almost every case, it leads to much better decisions, stronger policies and outcomes, and outcomes [00:16:00] that are much more closely aligned with what people living with neurological conditions actually need.

Sam Pauly (16:06):

When we talk about advocacy, how do we measure success with that? How do you know all of when it's actually working?

Dr Orla Galvin (16:14):

It's hard and it takes time to know advocacy is one of those areas where success isn't always immediate or easy to measure. If you only measure success by new legislation or funding announcements, you'll actually miss many of the really important [00:16:30] milestones along the way that are very impactful and have huge significance for people who are impacted by neurological conditions. For me and for AFNA, success often starts with engagement. One example is AFNA's MEP interest group on brain health and neurological conditions. Over time, we've seen increasing numbers of members of the European Parliament attending our events and not only attending, engaging, engaging with the speakers, engaging with patient organizations, [00:17:00] and recognizing neurology as a policy priority. And that's a real measure of success for us because it demonstrates a true growing political commitment. And earlier this year, that commitment translated into AFNA being invited as the only patient organization to speak at the European Parliament public hearing on neurological conditions.

(17:20):

And those opportunities don't just happen overnight. They're built through years of consistent advocacy and relationship building. Success can also be measured in many [00:17:30] other ways. It might be a reduction in stigma, which we can monitor through patient surveys. It might be more young doctors choosing neurology as a career, more researchers entering the field, or employers and education systems becoming more understanding and supportive of people living with neurological conditions. Not every success is going to make the headlines, but each one has a contribution to improving people's lives.

Sam Pauly (17:58):

And what's the hardest thing would [00:18:00] you say to influence?

Dr Orla Galvin (18:03):

Oh, I would say the hardest thing is to influence investment. Convincing decision makers that funding neurological care, neurological research, and neurological support services isn't simply a cost, but rather a long-term investment. A long-term investment in their people and their society. And that remains one of our biggest challenges.

Sam Pauly (18:28):

And do you think there are things that advocacy [00:18:30] organizations should move away from or perhaps stop doing?

Dr Orla Galvin (18:35):

If there was one thing advocacy organizations should move away from, I think that lived experience is something to consult at the end of a process. I think people need to move away from that and rather consider it as something to build into the process from the beginning. Researchers, clinicians, and policymakers, they all bring essential expertise, [00:19:00] but people living with neurological conditions and their families are the experts in the realities of what living with those conditions bring every single day. The strongest outcomes come when those different forms of expertise are treated as equally valuable.

Sam Pauly (19:17):

And you've spoken already a little bit about how advocacy doesn't happen overnight. So how do you maintain momentum and keep going when those changes and impacts and success can take years rather than months?

Dr Orla Galvin (19:30):

[00:19:30] I think that people living with neurological conditions and also people working in neurology understand better than most that meaningful progress rarely happens overnight. Many neurological conditions are lifelong and people show extraordinary resilience every day. As advocates, we draw inspiration from that resilience and we celebrate the small wins. We recognize that lasting policy change is [00:20:00] often very incremental, and we keep reminding ourselves that every conversation, every meeting, and every policy change has the potential to improve life for us or for someone else living with a neurological condition. And that's what keeps us going.

Sam Pauly (20:17):

Let's look ahead as we come to the close of this episode, Ola. One of Efna's anniversary initiatives is Brain Talks, which is going to be happening at your first conference. Why is storytelling becoming such an important [00:20:30] way, would you say, of influencing policy?

Dr Orla Galvin (20:32):

One of the reasons we launched Brain Talks as part of EFNA's 25th anniversary, and yes, we will celebrate this with a conference in September, is because stories have the power to do something that statistics alone often can't. They create understanding, empathy, and action. As advocates, we spend a lot of time talking about prevalence, about economic burden [00:21:00] and health system pressures. And those figures are incredibly important, but numbers don't explain what it's like to wait for years for a diagnosis, to lose your independence or your job, to struggle to stay in any form of work or education, or to care for a loved one living with a neurological condition. Personal stories bring those realities to life in a way that data alone never can. [00:21:30] It doesn't mean that stories replace evidence, definitely not, but they do absolutely strengthen it. The most effective advocacy combines really robust scientific evidence with authentic lived experience.

(21:43):

When policymakers hear both as they do at our MEP interest group meetings, they're much more likely to understand not only the scale of the challenge, but also why action is so urgent.

Sam Pauly (21:56):

Looking ahead, what would be the one thing that you'd most like policymakers, [00:22:00] neurologists, and patient organizations to perhaps evolve or do a little bit differently?

Dr Orla Galvin (22:05):

If I could only ask one thing, it would be to continue to work together as equal partners. None of us can solve these challenges alone. Policymakers create the environment for change. Healthcare professionals bring the clinical expertise. Researchers drive the innovation, and patient organizations contribute the lived experience that ensures those solutions actually meet people's [00:22:30] needs.

Sam Pauly (22:31):

Let me ask you one last thing for our listeners. If they could take away one message from our conversation today, what would you like that to be?

Dr Orla Galvin (22:40):

One message would be that neurological conditions affect far more people than most of us realize. And improving brain health and neurological care is not just a health issue. It's very, very much a societal issue. Every one of us either knows, loves, [00:23:00] is, or one day will become affected by a neurological condition. The progress we've seen over the last 25 years shows what is possible when people work together with a shared purpose, a shared vision and goal, but we're only at the beginning. If we continue to collaborate, to listen to one another and keep people living with neurological conditions at the center of every decision. I'm really optimistic about what the next 25 years can achieve.

Sam Pauly (23:30):

[00:23:30] Ola, it has been so wonderful to have you on the podcast. Thank you so much for all your messages of positivity and hope and sharing EFNA's journey and the lessons that have been learned over the past 25 years. Thanks for being with us.

Dr Orla Galvin (23:43):

Thanks so much, Sam.

Sam Pauly (23:45):

And thank you for listening to One Voice for Neurology. Now, if you enjoyed this episode, please do follow the podcast, share it with your colleagues and your networks, and help us spread the word. Join us again next time when we're going to be catching up with the World Health Organization [00:24:00] to continue the conversation on advancing brain health and neurological care worldwide. Until then, thanks for listening. Bye-bye. You've been listening to One Voice for Neurology with me, Sam Pauly. This podcast is produced on behalf of One Neurology, a global partnership bringing together neurological organizations, clinicians, researchers, patient advocates, and industry partners to make neurology a global health priority. To explore [00:24:30] One Neurology's work and find out more, visit www.oneurology.net.