At the recent ERS Congress, ELF welcomed Liam Galvin as the new Chair of the ELF Patient Advisory Committee (PAC) as he takes over from Mikaela Odemyr.
Liam Galvin has been a long-standing representative of the European Pulmonary Fibrosis Federation (EU-PFF) within the ELF Patient Advisory Committee (PAC). After being appointed as the new PAC Chair at the ERS Congress, he highlights his plans for the future and what he wants to achieve in his new position.
My name is Liam Galvin – I’m originally from the UK but I have been based in Ireland for 30 years. My professional background is social work and I became involved in patient advocacy via the Irish Lung Fibrosis Association when my brother-in-law Danial was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2009.
Since his diagnosis the family has been further hit with the diagnosis and death of three of his sisters from IPF, including my wife, Phyl. This familial form of IPF has had a massive impact on my family and obviously the concern over our three children and their many cousins. This has spurred my continued involvement in advocacy.
I have been a member of the PAC since 2017 and have been very impressed at its development under Kate Hill and Mikaela Odemyr. I saw how it provided a conduit between patient organisations and the ELF team and was a way for us to highlight the concerns of the wider lung health community.
When I joined the PAC, I was new to patient advocacy and saw it as an educational resource. It helped me to understand what other patient organisations were doing and also highlighted the common issues that affect everyone living with a lung condition. From this, I was able to shape my own organisation’s work as I realised many of the issues within the pulmonary fibrosis community were common to all. This led our group to look beyond pulmonary fibrosis in a broader sense, knowing that working with others on broader issues would also benefit our community.
I wanted to apply for the role of PAC Chair as I have learned a lot from being a member and felt that it was time to contribute in a deeper way as the opportunities around patient involvement became more embedded in legislation. I saw a chance to contribute to this and build on the work done by Mikaela.
As CEO of a large umbrella organisation, I understand that partnership and listening are paramount.
My organisation is made up of over 20 groups, each built up by passionate and highly experienced advocates with diverse backgrounds. The PAC is the same as this. I see all members as equals: everyone must be listened to and their particular concern embedded into our work.
This mindset is a skill I can bring from my role as CEO of EU-PFF. We need to find common ground where our advocacy and united voice can bring the results that benefit us all.
The PAC has several new members and the times we operate in as patient advocates are changing, so I am looking forward to learning and growing alongside the other great members of the PAC. Through sharing their experiences and knowledge, this in turn benefits our own groups and the larger ELF network.
I hope to see further progress made around patient involvement, both, as part of ELF activities and in the broader European context. The PAC must highlight the issues common to all lung health patients and their experiences, as well as the opportunities that exist. This will help ELF continue to contribute to change.
I have attended every ERS Congress since 2014 and for me they have been an amazing opportunity to learn about my disease area and the latest developments and to witness the humbling efforts that clinicians and researchers are directing into helping patients. This year, it was interesting to learn about the developments in IPF, especially within its diagnosis and treatment.
I also find the ERS Congress a great place to learn from other patient advocates. This year, I noticed a greater involvement of patients speaking in sessions and also being involved in clinical research collaborations (CRCs). It is great to see more people advocating for their condition, and I am excited to see what the future brings.
The most interesting thing about me is one I share with many other patient advocates: our work came about accidently. We did not look for a role within advocacy, but saw a need. I am not a big fan of leaving home and travelling and I can find public speaking a frightening experience, but I do it. Advocacy is not something that I trained for, or aspired to do, but like many others, I do it because I believe it has to be done.
