Why volunteers choose to join Our Future Health

Spotlight – 15 September 2022
Our research programme needs millions of people to come together and help future generations live healthier lives for longer. Here, members of the public discuss their personal reasons for signing up
Three Our Future Health volunteers
Our volunteers have diverse reasons for participating in Our Future Health. From left to right: Renuka Baldwin, Paul Hooley, and Joanne Foden

Our Future Health wouldn’t exist without the help of the public. We need up to five million people from across the UK to join us, so that we can create a detailed picture of the nation’s health. By combining our volunteers’ health-related data, we can offer health researchers the ability to find new ways to prevent, detect, and treat diseases.

Why do people decide to participate in Our Future Health? Our volunteers have many different reasons. Some motivations are shared by many, others are unique to an individual.

A chance to give back

“Joining Our Future Health feels like a way I can give back for all the treatment I’ve received from the NHS,” says Joanne Foden, a programme management officer who works for the United Nation’s environment programme.

Joanne has had two significant health experiences in her lifetime. In 1996, she was diagnosed with with Stage 2b Non-Hodgkin’s lymphoma, at the age of 26. The disease required an aggressive chemotherapy treatment and experimental stem cell transplant. Years later, advanced arthritis in her left hip meant she was unable to walk without the aid of a stick. Joanne underwent a full hip transplant in 2018.

In both cases, she says the treatment that she received was excellent. “I wouldn’t be here without the NHS doctors who treated my cancer – and I love my new hip! I’ve been blessedly pain free since the operation. I swim every day and walk miles at weekends.”

For Joanne, Our Future Health presents an opportunity for her to contribute towards the kind of health research that she has benefited from during her lifetime. She points out that while her cancer treatment was successful, someone given the same diagnosis today would receive different care, including more targeted chemotherapy. Statistically, that person would also be roughly 10% more likely to survive for at least five years – proof that researchers continue to improve the healthcare we receive.

Creating new opportunities in health research

It’s a picture that Paul Hooley knows well. As a retired university lecturer in molecular biology, Paul has a professional interest in DNA research and how it can lead to improved healthcare for everyone. “Our Future Health grabbed my attention because it’s the culmination of things that, 30-odd years ago, I used to tell students we’d be able to do in the future,” he says.

Paul is excited by the scale of our programme: by combining millions of people’s DNA sequences with their health records, he believes Our Future Health will give researchers the tools he dreamed of during his career. “The scale of the database makes such a difference. It will make the world of difference to research.”

Paul also says he has a personal reason for volunteering. He regularly looks after his young grandson – and he says the experience reminds him that he is invested in the health of the next generation. “By volunteering for Our Future Health, I’m saying ‘my health records and my unique genetic make-up are going to help other people in the future’. It might help members of my own family.”

He says he will encourage friends and family to follow his lead in the future: “Signing up was an easy process. It felt very straightforward.”

‘Researchers need people from all backgrounds’

Like Paul, Renuka Baldwin is motivated by the thought of using her genes to help others. Renuka, a dressmaker and teacher, describes herself as Anglo-Indian – her mother was born in Britain and her father was born in Kenya.

She says she is very aware of the diversity problem within health research. Many past studies have used participants who do not represent the UK’s diverse population, which means their findings may not apply to everyone. That’s why Our Future Health will ensure that our database of volunteers truly reflects the make-up of the UK, across ethnicities and socio-economic groups. To help all kinds of people, we need every kind of person.

“I know that people like me are needed by researchers,” says Renuka. “I joined Our Future Health knowing that it could help people like me in the future.” Renuka adds that she sometimes wonders what role her genes have played in her own health history – she has survived breast cancer and now lives with an autoimmune disease. “I don’t know if it’s hereditary. Is it to do with the Indian side or the British side of my family?

“Any research is valuable for our young people, our children, and I hope that one day, researchers will join the dots.”

Our Future Health volunteers have their own stories and reasons for joining. However, one thing unites all the people who participate in our programme. They want to help future generations live in good health for longer.

Volunteer voices

Joanne, Paul and Renuka are part of our Volunteer Voices series, where Our Future Health participants share their reasons for joining. You can read their stories in full using the following links:

Joanne Foden: ‘I wouldn’t be here without the NHS – I wanted to give something back’

Paul Hooley: ‘Joining Our Future Health is like leaving your body to medical science – while you’re still alive’

Renuka Baldwin: ‘I want to help people like me in the future’

Would you like to be featured in Volunteer Voices? Get in contact with us by emailing stories@ourfuturehealth.org.uk. Everyone has something unique to give.