News & Stories

Spring 2025 Participant Newsletter

Meet fellow participants who are members of the participant panel

We held our second online participant panel meeting in November. Here’s the screenshot from the meeting and below we hear from two participants (Arlene and Katie) about their experience of being members of the panel.

Arlene

I chose to participate in the Generations Study after reading an article about how race and ethnicity affect how patients respond to drugs and how the diversity gap in clinical trials could be undermining outcomes for minorities. After understanding how clinical trials are used to make major decisions around future treatments and drug development pathways, I felt compelled to do my bit and become part of the solution, not part of the problem. By volunteering, I wanted to ensure future research, and any trials and cohorts better reflected the communities they serve.

  • I am single, driven and a management consultant, who enjoys playing sport, keeping up with friends and having fun. I’m a firm believer that life’s too short and that kindness and caring are under-rated values.

    Participating in the study has been very easy and interesting. The filling out of questionnaires is relatively quick and generally sent every few years. Of late, I have more time, so it’s been interesting to read up on some of the research papers.

    Lately, the ability to join a Participants Panel and engage directly with the researchers [and other participants] has been illuminating. It's so humbling to understand how the researchers are using my data to research the quirks of breast cancer.

    I was happy to join the participants panel as I felt compelled to help make this study a success and shape the future of participants contributions in cohort studies. I’m convinced, over time, cohort studies can be developed to achieve so much more, and you can see The Breast Cancer Now Generations Study has been a template for Our Future Health and I’m sure the best is still yet to come.

    It’s been an insightful process, which has allowed me to deliver on a societal objective with very little effort. I’d like to think I’ve been able to be ‘an influencer’ whilst remaining private and discreet.

Katie

I initially joined up at my Mum’s suggestion as she also was signing up. At the time I had just started university studying Pharmacy and I thought it was an exciting opportunity to take part in real life research. I also wanted to support research that has the potential to make women’s lives better in the future, something I’m even more keenly aware of after having my own daughter seven years ago.

I’ve found the process to be super easy and straightforward. The questionnaires aren’t too taxing, thankfully I have a relatively straightforward medical history so not too much to remember when adding in my details.

  • I continue to participate as it’s straightforward and really doesn’t take up too much of my time. I’ve worked in scientific research for the last 15 years and understand the vital need for continued participation from volunteers. Without us and our valuable input, whether it’s filling out a questionnaire or giving consent for access to other data like medical records, the study would fall flat on its face.

    I live in Belfast, Northern Ireland, with my husband Graeme, daughter Lily and stepson Jackson. Personally, I love life’s simple pleasures. Quality time with my family and friends, getting outside to enjoy the beautiful Northern Irish coast and countryside. You’ll often find me getting my hands dirty in the garden, baking in the kitchen or diving into a good book. I’ll also never say no to a delicious meal paired with a great glass of wine.

    Professionally, I’m currently a Principal Research Pharmacist working for a large pharmaceutical company. Prior to that I spent 10 years leading a manufacturing pharmacy department in a company that runs Clinical Trials. I also completed my PhD in Pharmaceutical Microbiology in Queen’s University Belfast, after realising that a life counting tablets as a community pharmacist was not for me!

    I’m always interested to see the study newsletters come out with new findings and see what the Generations team are up to, so when I was invited to join the participant panel, I was happy to do so. I was intrigued to find out more about the panel and what the team wanted us to do. I’m a curious (nosey) person by nature! So far, I’ve really enjoyed getting to meet some other participants and hear their own personal stories. The meetings have been well arranged by the Generations team, with lots of time for discussion and hearing everyone’s viewpoints. It’s also been great to get to meet more of the Generations team, especially some of the younger researchers just starting out in their careers and what they hope to achieve.

    It’s satisfying to be involved in giving feedback on what things work or don’t work for participants, for example, testing out the questionnaires for functionality and advising on what we would like to see in the newsletter.