Patients have always been at the heart of Arantxa’s work. Having been both a carer and trainee biomedical scientist, she initially pursued a career in the lab before realising she missed the direct connection with the people ultimately affected by the science.
This led her to undertake a PhD focused on cystic fibrosis, using MRI to better understand gut symptoms and explore new ways of diagnosing issues related to fat digestion. That’s when she discovered a passion that would shape the next stage of her career.
“Through my PhD I discovered the world of PPIE,” she explains. “I ran focus groups, hosted podcasts and co-hosted a series of webinars, all with the aim of helping people with cystic fibrosis become more involved in research and improving their experience of taking part.”
“The work I did through one focus group led to changes in my research project that made things easier for patients,” she continues. “Getting those changes approved felt like a huge win because it made a measurable difference to the people taking part.”
As her PhD drew to a close, Arantxa faced a choice between continuing on a traditional research path or pursuing her growing passion for engagement. She chose the latter. “I'm so happy to be working as the new PPIE Manager for The Lily Foundation,” she smiles.
Supporting the LifeArc Centre and increasing patient involvement
Bringing a unique combination of scientific expertise, patient-facing experience and a passion for engagement, Arantxa joins our charity at an exciting time for mitochondrial research.
A key focus of her new role will be strengthening patient involvement through our IMPACT group, ensuring that people affected by mitochondrial disease have meaningful opportunities to shape research from start to finish. One of her immediate priorities will be supporting engagement with the LifeArc Centre for Rare Mitochondrial Diseases.
“I’m particularly excited to use my experience to help amplify the voices of the fantastic Lily community, especially with regards to the LifeArc Centre,” she says. “It will help bring the voices of people with mitochondrial disease to the front of research priorities and increase their involvement throughout the research lifecycle.”
Why patient involvement matters more than ever
Arantxa believes the growing emphasis on patient involvement reflects a wider shift across the research landscape.
“Researchers are realising their work needs to be relevant to the patients they serve,” she says. “But this progress has only happened because of the advocacy and campaigning of patients who’ve fought to be involved and represented in research.”
While many funders now require evidence of patient involvement, Arantxa thinks meaningful engagement must go beyond a simple box-ticking exercise.
“Patient involvement can sometimes be treated as something that researchers have to do, rather than something they value. The Lily Foundation have done a great job helping researchers include patient voices in the right way, and I’m excited to continue building on that.”
She sees benefits for everyone involved. For patients and families, engagement provides an opportunity to influence the direction of research and ensure studies are practical and relevant. For researchers, it brings invaluable insight into lived experience and helps make research more impactful and meaningful.
A memorable first week
Arantxa’s first week with us included attending the annual Family Support Weekend, providing an immediate introduction to the community she’ll be working closely with.
“I was told it would be an emotional event and, sure enough, it was!” she reflects. “But what a fantastic opportunity to meet so many families affected by mito. I’m so grateful to everyone who took the time to speak with me, whether they were sharing their story or simply making me feel welcome.”
The weekend also provided an opportunity to meet researchers and hear about emerging developments across the field. Her biggest takeaway from this was a sense of optimism.
“It feels like a really hopeful time to be involved in mitochondrial disease research and PPIE. New research is emerging all the time and new treatments are being developed or nearing availability. And it’s clear to me that researchers see the patient voice as more important than ever.”
Looking ahead
As she begins this new chapter, Arantxa is eager to work with patients, families and researchers to ensure that lived experience continues to shape the future of mitochondrial disease research. Her message to the community is simple:
“I want to help represent your perspective in research. PPIE is better than it’s ever been, and it’s only going to improve the more we work together! If anyone, patient or researcher, would like to get in touch with me about being involved, please email [email protected].”
Good luck, Aranxta! We look forward to hearing more from you very soon.
