Meet Irene Soulsby

“Research is a great way of giving something back.”

In 2003, a breast cancer diagnosis turned Irene Soulsby’s world upside down. She decided to get involved in research “quite by accident” when she was diagnosed, but 15 years on, Irene still contributes to research in lots of different ways. Irene feels very strongly about the importance of giving something back to the NHS, our future health and other people's health.

Tell us a bit about yourself

My name is Irene, I’m 60 years old from Newcastle upon Tyne and I’m a breast cancer survivor. I was diagnosed when I was age 45 and underwent successful treatment to remove the tumour in 2003. Since then I am very proud to have been involved in research as a healthy participant.

How did you get involved in research?

I discovered research quite by accident really. When I was diagnosed with breast cancer in 2003, I agreed to donate some of the tissue removed during my surgery to research. I wanted to do anything I could to contribute to research into this terrifying disease. This was the start of my ‘research career’ and I soon became involved in a wide range of different studies and projects. I’ve been taking part in studies ever since.

What kind of research do you take part in?

I take part in a really wide mix of research projects, including direct participation as a ‘study subject’ and involvement in focus groups and research panels. I also contribute to the engagement of other patients and members of the public by taking part in awareness raising activities such as ‘Building Research Partnerships’ and promotional videos for Macmillan Cancer Support.

Going through cancer as an employee is a strange and difficult experience and I’ve contributed to resources such as a Macmillan ‘cancer in the workplace’ booklet which is a guide for employers and a guide for people going through cancer.

As a ‘healthy volunteer’, I have been involved in laboratory-based work such as activity monitoring, gait studies, exercise studies and assessment of brain activity for comparison with various patient groups. On other occasions my involvement is as simple as completing a questionnaire, or online puzzles. It’s so varied!

I’m also a member of a group called ‘Perspectives in Cancer Research’ at the Freeman Hospital which focuses on cancer care and contributes to other aspects of patient care, working closely with Cancer Research UK.

Why do you think clinical research is so important to the NHS?

Clinical research is vital to the NHS to help make improvements to patient care and outcomes. I am excited to be involved in research that makes a contribution to the advancement of medical and scientific knowledge, even in a small way. Research helps everyone understand more about growing old and what that means, finding more treatments and cures for diseases. Eventually researchers hope to make disease a thing of the past. It’s only with real people’s contributions that research can move forward.

How has it benefited you personally?

My involvement in research has brought many benefits to me on a personal level. Taking part in an exercise study for example, meant that I had the chance to see what improvements were taking place in my own body.

By developing my own confidence to say “I don’t know” or ask what something means, I’ve improved my own knowledge and awareness of conditions that either myself or people close to me might suffer from and it’s changed the way I behave in a clinical situation – definitely for the better.

Would you recommend it to others?

I’m so proud to be contributing to research, I would absolutely recommend research to others. I have had some amazing experiences and met so many amazing people.

I left school at 16 and worked in a clerical role so when I first started taking part in research, I was worried about my lack of academic qualifications and really thought I wasn’t the person the researchers were looking for. But I soon realised that by reviewing the summaries of research proposals, the patient information and support materials, and just by asking questions, I was actually helping the researchers to present complex issues in a language that’s easy to understand and accessible to everyone.

What advice would you give to people who might be thinking of getting involved themselves?

To anyone thinking about getting involved, I would say that it is a fantastic time to take part in research. It’s exciting and while it’s easy to think your individual contribution will be small, the findings could be shared with scientists and clinicians around the world to develop new and more effective treatments.

My advice would be to take any research commitments very seriously and stay dedicated throughout the project. For the integrity of the research it is important to follow through with the requirements of the study.

It’s much easier to get involved than you might think. The NIHR website has details of current studies which is a great starting point and well worth a look.

https://www.nihr.ac.uk/patients-and-public/how-to-join-in/