Prostate Cancer Research (PCR) has received sponsorship to support its first of its kind prostate cancer patient data platform and virtual registry.
The project, which is supported by IQVIA and sponsored by Bayer and Advanced Accelerator Applications, will see a new patient-centric platform that will bring together specific health-related data from multiple sources and link this to data entered by patients who have signed up to take part.
The aim is to accelerate and transform prostate cancer research and care and to help further demonstrate that the UK is a vital destination for global research through the power of UK health data.
The platform aims to serve as a tool for improving diversity and inclusion in research studies, increasing knowledge relating to the patient journey and facilitating the delivery of personalised and precision medicines.
This public and private sector collaboration aims to support recruitment of patients to trials, and the evaluation of new tests and medicines proposed for use in the NHS, by collecting and curating real-world and patient sourced data.
“So much data exists, but it sits in different places, and everyone tells us that accessing and integrating it is a problem. This is slowing down the future and time is critical when dealing with cancer,” said Oliver Kemp, CEO at PCR.
“We believe our platform will become a national exemplar for how health data is used in the future by putting patients at the heart of research, which is the cornerstone of delivering innovations that meet their needs.
“Despite the therapeutic advances of the past decade, in the UK, one man still dies of prostate cancer every 45 minutes.
“Innovative thinking and new approaches are required if we want to change this. Improving access to relevant health data is the key to unpicking the complexity of prostate cancer, and to driving excellence in research and care.”
The PCR team have consulted extensively with patients, clinicians, policymakers, researchers, and companies in developing their plans.
The new platform aims to help overcome challenges that have held back the potential of health data in the past, speeding up ethical access to data and improving the quality and completeness of health-related data available to researchers and industry.
The prostate cancer patient community has demonstrated strong support for the initiative, with more than 3,000 individuals pledging to participate prior to launch.
All aspects of the development and operation of the platform, including its ongoing development and governance, will directly involve prostate cancer patients.
Leading experts and patient groups working together
The initiative is also being supported by a panel of leading experts and patients – including clinicians, statisticians, AI and machine learning, genomics, and commercialisation of data solutions – to lead on the governance, platform design, sustainability, and partnerships.
Advanced Accelerator Applications are sponsoring the development and delivery of the platform in its first year while Bayer are sponsoring the feasibility study element of the project.
UK CEO of Bayer Antonio Payano said: “We are committed to supporting innovative approaches to improve prostate cancer research. Bayer’s focus is on improving every single patient experience and ensuring that each individual has access to the most appropriate treatments for them.
“With the experience and heritage that Bayer has working with patient groups including Prostate Cancer Research, we know we are working with the very best and most passionate stakeholders qualified to help make this vision a reality.”
Lots of work is already ongoing within the NHS to treat prostate cancer and help fight off or prevent the disease. A very recent example comes from the Norfolk and Norwich University Hospital’s urology team, which is offering a new, less invasive robotic treatment for men with enlarged prostates.