The ELF Patient Advisory Committee (PAC) is a group of representatives from 20 patient organisations that are part of the ELF patient organisation network. The Committee represents patient organisations from a wide range of countries and representing many different respiratory conditions. The PAC provides guidance and support to ELF in all its activities.
Kate Hill represents the June Hancock Mesothelioma Research Fund and has been Chair of the PAC for almost three years. As her mandate comes to an end in September 2020, Kate shares her experience of the PAC and her time as Chair.
What types of activities does the PAC get involved with?
The Patient Advisory Committee (PAC) provides input to the ELF leadership on all issues relating to patient organisations. The PAC helps to guide ELF activities; for example advising on ELF strategy and priorities, and highlighting topics which require collaborative advocacy at a European level. Strong links between PAC members and ELF/ERS means better access to research findings and many opportunities to participate in or co-produce research and advocacy projects. PAC members can also be called upon to review applications for ELF awards, comment on papers or guidelines or help plan ELF/ERS events such as the annual President’s Summit and the ERS Congress.
What impact does being part of the PAC have on the patient representatives involved?
Our PAC members come from a variety of backgrounds; some are patients, while others are volunteer or employed representatives from patient organisations. Being part of the PAC gives patient organisations access to a wider patient community. It opens up opportunities to become better informed and stronger influencers, not just for themselves but also for others with respiratory conditions.
What made you decide to run for the position of PAC Chair?
I was one of the founding members of the PAC, joining the committee in 2011 when the first-ever meeting was held at the ERS Congress in Amsterdam, the Netherlands. I was elected by the PAC to be their representative on the ELF Council in 2017, so it seemed a sensible next step to run for PAC Chair when my predecessor Dan Smyth stepped down.
What would you say is the biggest achievement of the PAC while you have been the Chair?
The biggest achievement of the PAC during my time as Chair has been supporting the steady growth of patient involvement in ELF activities and the ERS Congress. The number of patient speakers at Congress has increased each year, many recruited through the PAC, and more patient organisations prepare and present posters at Congress. The PAC also makes a major contribution to the annual ELF Patient Organisation Day, selecting a theme and forming the steering group that plans the programme.
Would you recommend this role?
Yes, most definitely. It has been a rewarding experience and a genuine privilege to lead the PAC as Chair. The role offers the opportunity to work more closely with ELF to promote and raise the patient voice throughout Europe and the ERS, but above all you get to meet some wonderful and inspiring people.
Every three years, ELF invites organisations to re-confirm their interest in remaining on the Patient Advisory Committee for the following three years. When a vacancy arises, ELF invites members of the wider ELF patient organisation network to apply to join the Committee. Interested organisations are invited to submit a brief outline of their organisation’s aims, remit and interest in joining the Committee. PAC members will vote and new members will be selected to ensure a good balance of disease areas, European countries and expertise.
If you are part of a patient organisation based in Europe and are interested in joining the PAC, please email Courtney Coleman at courtney.coleman@europeanlung.org.
