Stephen Fry urges patients to help save lives with new prostate cancer research

Actor and broadcaster Stephen Fry is urging prostate cancer patients to sign up for a major new research initiative that could save lives.

The NHS is joining forces with the charity Prostate Cancer Research to provide unique access to healthcare data for research that could transform patient care and treatment of the disease.

Prostate Progress, a new project launched today by Prostate Cancer Research, has been selected to take part in NHS England's Data for Research and Development Programme. The initiative is the first of a series of ‘driver projects' which will support innovative uses of health data.

The project will provide safe and secure access to the clinical data of prostate cancer patients who agree to take part, alongside data the patients directly input – such as how they are feeling and the real-life effects of their cancer and its treatment.

Researchers hope to gain unique insights into prostate cancer by combining the two sets of data to understand more about the disease, develop new treatments and tests to improve diagnosis, monitor the safety of treatments, and plan new NHS services.

Stephen Fry, who has previously had prostate cancer surgery, is keen to encourage others living with a diagnosis to get involved with the project. Speaking of his support for Prostate Progress, Stephen Fry said:

“Prostate Progress represents a beacon of hope in the fight against prostate cancer, a disease that impacts countless lives globally.

“By harnessing the power of our own health information, we empower researchers to unlock vital insights, leading to groundbreaking advancements. We can bring the world closer to a future where this disease is no longer a threat, where early detection and effective, humane treatment saves lives.

“I am excited to be part of Prostate Progress and urge others to join me.”

Anyone diagnosed with prostate cancer, either recently or in the past, is being encouraged to take part in Prostate Progress. You can find out more information and sign up at www.ProstateProgress.org

Dr Vin Diwakar, National Director of Transformation at NHS England, said:

“This unique collaboration with Prostate Cancer Research will provide new insights into prostate cancer and improve care for patients.

“The NHS Research Secure Data Environment Network allows us to link data and enable research at a scale not previously possible, while maintaining the highest levels of security.

“Researchers will benefit from the rich picture provided from both NHS clinical data as well as information from patients who volunteer to take part and share their experiences.

“I'd encourage anyone who has had prostate cancer to sign up for Prostate Progress and help improve the lives of people with the disease.”

Oliver Kemp, CEO of Prostate Cancer Research, said:

“Prostate Progress puts data back into the hands of the patient, allowing them to record and track the impact of prostate cancer on their day-to-day lives.

“Putting patients at the heart of research and bringing the data they contribute together with clinical data will be massively powerful. It will be the key to driving forward scientific discoveries and innovations to deliver tests and treatments that meet patient need.

“We are delighted to be working in partnership with NHS England and look forward to working alongside our NHS colleagues as we reap the promised benefits for patients and the NHS.

“We are tremendously grateful to all those who have contributed to the work that has gone into designing and developing Prostate Progress, and most especially to men diagnosed with prostate cancer, who have given freely of their time and energies to support this ground-breaking initiative."

More information and videos about Prostate Progress are available at www.pcr.org.uk/Prostate-Progress

Notes to Editors

A video of Stephen Fry encouraging people to take part in Prostate Progress is available here: https://www.youtube.com/watch?v=1U3T87uL1oM

All patient information collected and analysed as part of Prostate Progress will be pseudonymised and held in the NHS Research Secure Data Environment Network, which means that any personal information such as names, addresses or NHS numbers are replaced with artificial, or ‘pseudo', information. Secure data environments have specific design features that allow approved researchers to access and analyse de-identified data without it being downloaded or leaving the highly-secure IT platform.

The NHS Data for Research and Development Programme is driving secure, transparent and ethical use of NHS health data to improve care and save lives. Data is critical for the NHS to improve patient care. We are investing £175 million in the Data for Research and Development Programme to transform how we use health data. The programme is enabling transformative research to improve patient outcomes and driving a major shift from data sharing to a data access model, increasing data security, privacy, and transparency. https://digital.nhs.uk/data-and-information/research-powered-by-data

About Prostate Cancer:

Prostate cancer remains the second leading cause of cancer death among men in the UK, responsible for 14% of all male cancer deaths and 22% of all deaths among Black men. 1 in 8 white men, 1 in 4 Black men and 1 in 13 men of other ethnicities will face a prostate cancer diagnosis in their lifetime. Older men, those with a family history of the disease, and individuals in deprived areas are at even greater risk.

About Prostate Progress:

Prostate Progress is the first-of-its-kind patient data platform that aims to support research across various domains, including treatment outcomes, quality of life, patient experience, and healthcare resource utilisation. Prostate Progress' goal is to enhance the treatment, care and understanding of prostate cancer by facilitating integrated patient-centric research that ultimately benefits the entire prostate cancer community. Prostate Progress in an initiative of the charity Prostate Cancer Research, a patient-centric research charity dedicated to saving and improving lives by supporting the best research and ensuring it reaches every part of society.