[London, UK] – Prostate Cancer Research (PCR) is pleased to announce sponsorship from Bayer and Advanced Accelerator Applications (A Novartis Company) in support of the charity’s first of its kind prostate cancer patient data platform and virtual registry. With the support of IQVIA, the new patient-centric platform will bring together specific health-related data from multiple sources and link this to data entered by patients who have signed up to participate. 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.
The PCR team have consulted extensively with patients, clinicians, policymakers, researchers, and companies in developing their plans. This new platform aims to help overcome challenges which 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. 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.
“One of the main reasons why I think this registry is such a positive idea arises from my own experience. What I’ve tried to do to help myself, such as diet, exercise and methods of stress management, is effectively ‘invisible’ to clinicians and statisticians. I can only assume that they will judge my outcome purely on my age, disease characteristics and the treatments. With the broad range of patient-contributed information that will be included in the registry, which for me is a powerful symbol of the fact that Prostate Cancer Research sees the patient as a whole person, I’m certain this platform will become a very important resource in shaping treatments in the future.” Dafydd, 61 years old, Prostate Cancer Patient Advocate
Over the last 18 months, PCR has collaborated with IQVIA to leverage their experience in health-data-enabled clinical research, real world evidence studies, data curation and analysis. As a leading global provider of advanced analytics, technology solutions, and clinical research services to the life sciences industry, IQVIA is well positioned to help PCR develop its vision and strategy for the platform. PCR will be working with IQVIA on the implementation of key parts of the programme.
“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 of Prostate Cancer Research. “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. We are delighted that Bayer and Advanced Accelerator Applications share our vision and recognise the vast and transformative potential of the platform.”
With Bayer sponsoring the feasibility study element of the project, “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.” Antonio Payano, UK CEO of Bayer
Advanced Accelerator Applications (A Novartis Company) are sponsoring the development and delivery of the platform in its first year. “Every 45 minutes one man dies from prostate cancer – that’s more than 12,000 men every year. Robust data, innovation and analytics are paramount in helping to save lives and reduce the impact of these untimely deaths on families.” Alessandra Dorigo, Head of Country of Advanced Accelerator Applications.
“We believe that patient organisations play a central role in leading and informing the use of health data in clinical research and healthcare provision,” said Tim Sheppard, SVP & General Manager, North Europe. “IQVIA has been pleased to provide support to Prostate Cancer Research to help them enhance the UK’s life sciences sector’s understanding of prostate cancer to improve health outcomes for people living with the condition.”