Flatiron Health UK Oncology Real-World Database v2.0
Research type
Research Database
IRAS ID
319816
Contact name
Arunan Sujenthiran
Contact email
Research summary
Flatiron Health UK Oncology Real-World Database
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
22/YH/0211
Date of REC Opinion
16 Feb 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
To improve the availability and quality of real-world oncology data in the UK, where over 350,000 people annually are diagnosed with cancer, Flatiron Health UK will partner with NHS Trusts to collect, curate and anonymise data about people with cancer. Leeds Teaching Hospitals Trust (LTHT) is Flatiron Health UK’s first partner, and joint applicant for the creation of a research database.
This database will include retrospective, routinely collected data about adult cancer patients, specifically structured and unstructured data related to their diagnosis and treatment, including, for example: demographic and cancer treatment information (e.g., diagnosis, treatment regimen, disease progression).
Prior to securely sharing identifiable data with Flatiron Health UK, the Trust will remove data from patients who have opted-out (via NHS or local opt-out mechanisms) and carry out initial data minimisation, including removing identifiers where possible (e.g., name, address). Flatiron Health UK's Data Extraction process is automated: Data is first pseudonymised for purposes of processing, and then anonymised for purposes of transferring to the Flatiron Health UK environment for further curation and creation of research ready data sets.Only anonymised data will be made available to researchers in industry and academia, under strict privacy-preserving measures in a Trusted Research Environment.
Research programme
Flatiron Health UK is a wholly cancer-focused organisation specialising in creating high-quality research datasets about cancer treatment and outcomes. Flatiron Health UK has extensively engaged patients and the public, independently and in partnership with NHS Trusts, to ensure that patients accept this proposed use of their data, are involved in research oversight, and understand how they can opt-out if they do not want to participate. Flatiron Health UK expects to enable researchers, in a Trusted Research Environment, to work with the anonymised data in the Flatiron Health UK Oncology Real-World Database to (but not limited to): - Inform clinical trial design and the research and development of new cancer treatments for various cancer types. - Inform regulatory and health technology assessment decision-making to potentially accelerate availability of new cancer therapies. - Numerous other research applications that can improve the ability to treat and care for cancer patients. -Partner NHS Trusts will also receive high-quality data about their own patients, and Flatiron Health UK will support each Trust to use this data for patient care, service planning, and research including (but not limited to): +Benchmark and improve the quality of cancer care delivered; +Track and analyse patterns of care within a Trust, and benchmark against other Trusts.
Research database title
Flatiron Health UK Oncology Real-World Database
Establishment organisation
Flatiron Health UK Ltd.
Establishment organisation address
Ivy House
107 St Peter's Street
St Albans, Hertfordshire
AL1 3EW