Public contributor spotlight: Flic’s take

At the NIHR Birmingham Biomedical Research Centre, we work with patient and public contributors across a range of health conditions. But who are they, and what is it like to get involved in research as a member of the public? To find out, read this piece authored by our public contributor, Flic Jeyes.

The impact of long COVID

Six years ago the world changed, and so did my life. COVID‑19 arrived, social distancing became the norm, and everything I knew was turned upside down.

Although my initial illness wasn’t severe, my body has struggled to return to “normal” ever since. In the early months, I was frequently in and out of hospital. My main symptoms included severe fatigue, breathlessness, brain fog, and muscle and joint pain. I was unable to do simple things like cooking or even speaking with friends. Eventually, I lost my job and had to relearn how to work, socialise, and look after myself (often accepting support), while adapting to the ever‑changing rules my body now sets.

Finding my way into research

My experience of long COVID introduced me to the world of research and patient involvement through the University of Birmingham’s Therapies for Long COVID (TLC) Study, funded by the NIHR and UKRI. Through this, I began to realise that I still had a voice – even if, at first, I could only use it in 15‑minute blocks to provide input to the study. The team supported me in understanding what adjustments I need, what work looks like for me now, and how to navigate the variability that comes with chronic illness.

“I began to realise that I still had a voice – even if, at first, I could only use it in 15‑minute blocks.”

What made involvement possible

One of the most important things I learned was how to work with my body rather than against it. Simple adjustments made a huge difference. Being able to lie down during video calls, with the option to have my camera on or off, helped me participate. The whole team taking a five‑minute break during (virtual) meetings allowed me to stay engaged. Having time to review documents in advance meant I could process information in smaller, manageable chunks, at a pace that worked for me.

Just as importantly, there was no pressure to attend if I wasn’t well enough. That flexibility made it possible for me to contribute consistently over time. Managing my health while re‑engaging with work as a patient partner was a learning process, but the team made it feel collaborative – an ongoing, two‑way conversation about what worked, what didn’t, and how to make things easier for everyone involved.

Growing confidence as a public contributor

As my confidence grew, so did my enjoyment. My role varies from reviewing documents and shaping study and grant application ideas to testing interventions such as apps and wearables. Over time, I’ve been involved in a range of projects and learned more about innovative ways patients and the public can contribute to research. I’ve also taken part in webinars, YouTube videos, and in‑person discussions about patient involvement.

Sharing lived experience beyond the study

These experiences gradually opened doors I never expected. In 2024, I travelled to Germany to attend the International Society for Quality of Life Research conference, where I spoke alongside a researcher and a fellow patient partner about our paper Considerations for patient and public involvement and engagement in health research. Since then, I’ve taken part in workshops and panel discussions, including With patients, not for patients: a co‑delivery workshop for MedTech design professionals in industry and academia. More recently, I was honoured to attend the Academy of Medical Sciences’ Meaningful Patient & Public Involvement in Strategic Choices Netherlands–UK policy workshop.

“These experiences opened doors I never expected.”

Attending these events is a huge step for me, and I’m still learning how to manage the planning and preparation needed to make them possible. While I need to rest regularly during events – and take weeks or even months to recover – they remind me of something important: I can still contribute.

Looking ahead with hope

For anyone learning to live with a chronic illness, there is hope. There are people who genuinely want to help, and organisations willing to adapt to enable equal participation. My hope is that opportunities like these become easier to access, and that true accessibility becomes the norm rather than the exception.

At times, I feel sadness about the opportunities I’ve missed, both professionally and personally. But I also feel hopeful. Along this journey, I’ve met incredible people – many of whom I now call friends – and discovered opportunities I never knew existed. I’m seeing growing advocacy and education, alongside research that meaningfully involves patients. I hope this leads to better policies and more effective treatment, management and support for everyone living with long‑term conditions.

Living with long COVID has changed my life in ways I never expected. But it has also shown me the power of patient voices in research and decision‑making. My work in patient advocacy has created opportunities I never anticipated and connected me with invaluable peer support. I’m proud to continue contributing in any way I can – one conversation, post or discussion at a time.

Are you also interested in getting involved in research? Explore how you can join our community of public contributors.