By joining the Alliance, Cancer Research UK will work in partnership with some of the UK’s leading health and research organisations to maximise opportunities for trustworthy use and sharing of data for research and development. By making cancer data assets available for research, this partnership will help contribute to Cancer Research UK’s mission to bring forward the day when all cancers are cured.
The COVID-19 pandemic has demonstrated the essential use of data in research for enabling and accelerating the development of life-saving treatments and vaccines. Data research has contributed to our understanding of the impact of the pandemic on the health and outcomes of people with diseases, such as cancer. However, there are still significant barriers to conducting this type of research as most data about us – including our patient records, genomic data and medical imaging data – are hard to access and require significant effort to make usable.
To overcome this, the 70 members of the UK Health Data Research Alliance – a membership body for leading UK health and research organisations that manage health data – are working together to create consistent standards, to create more transparency on which datasets are available, and to shape regulations on the ethical use of health data for research and innovation at scale.
As part of its membership of the Alliance, Cancer Research UK (and its innovation engine Cancer Research Horizons) will make information on datasets under their control available on the Health Data Research Innovation Gateway – the UK’s portal for discovery and access to health data. The first such dataset is the OPTIMAM database (OMI-DB) which contains large numbers of mammography images collected from the National Breast Screen network. These images can be used to support research into the early detection of breast cancer.
All members of the Alliance are invited to develop best practice in areas such as privacy, transparency, public engagement, inclusivity and governance to ensure that health data are shared and used responsibly by researchers and innovators.
The Alliance is convened by Health Data Research UK (HDR UK) and is part of the UK-wide capability for the responsible use of health data for research and innovation, currently funded by the Industrial Strategy Challenge Fund (ISCF).
Dr Catherine Elliot, Director of Research at Cancer Research UK, said:
“Last week we launched our new research data strategy, working with people affected by cancer to ensure that we maximise the benefit of research data to improve patient outcomes. Joining the UK Health Data Research Alliance will help us share best practice, tackle common challenges and foster collaboration in aid of the goals we all share, which is to make sure that data are best used to support quality research so we can drive forward breakthroughs for patients.”
Dr Paola Quattroni, Head of Alliance Strategy & Engagement at HDR UK, said:
“We are delighted to welcome the largest charitable funder of cancer research in the world to the UK Health Data Research Alliance. This is the beginning of a long-lasting and valuable partnership that will bring together the cancer research community, Alliance members and Health Data Research UK in a joint effort to accelerate improvements to people’s lives through trustworthy use of health-relevant data.”
Debbie Keatley, a member of HDR UK’s public advisory board, said:
“I know how important early diagnosis can be. When I was diagnosed with breast cancer it had already spread to nearby lymph nodes. For me, this meant that as well as surgery I needed radiotherapy and chemotherapy too. If I had been diagnosed earlier, I might not have needed this, and while I’m grateful to be a cancer survivor, I live with the consequences of treatment.
As a patient advocate, I meet many people living with long-term effects that really impact their lives and I have lost too many friends whose cancer could not be cured. I’m delighted to welcome CRUK as a member of the Alliance. Responsible and timely data use is a long-held aim of cancer patients who want to see researchers make the most of the data we already have in order to help save lives.”
HDR UK looks forward to continuing to work in partnership with Cancer Research UK to facilitate ethical data sharing and to improve lives through research and innovation.
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