- Leveraging routinely collected health data has the potential to drive improvements in the diagnosis, treatment, and quality of life for patients with cancer as well as bring benefits to the wider NHS.
- Barriers exist to the use of health data for research, including the existence of incomplete datasets and data quality issues, limiting the value of insights which can be drawn.
- The report calls for scalable and reproducible data curation and collection processes, and encourages NHS trusts to consider public-private partnerships to drive improvements in data use research.
A new report by Public Policy Projects (PPP) calls upon NHS trusts to collaborate with patients, clinicians, and industry to better leverage data for the advancement of cancer care and treatment in the UK. It urges action to make better use of existing data sets and improve data collection processes to bolster research and development into new therapeutics and standards of care.
The report, Leveraging the Cancer Care Delivery Plan: Technology and data to integrate cancer research into clinical care, is the product of insights gathered from a roundtable chaired by Dr Claire Bloomfield, Director of the Centre for Improving Data Collaboration at NHS England and head of their Data 4 R&D programme. The roundtable was supported by Flatiron Health UK, and attended by senior stakeholders in UK cancer care as well as patient representatives.
The report explains that the NHS sits on the largely untapped resource of 75 years’ worth of patient data, which when utilised appropriately, has the potential to drive innovative research, improving cancer treatments and patient outcomes across the UK.
Despite this, there are challenges with existing patient data in the NHS. Information is poorly recorded and datasets are incomplete, reducing the overall quality of insights which can be generated and limiting their potential use for research and innovation.
The report recommends that existing data within NHS trusts should be carefully curated into high quality, research-ready datasets, by ensuring that mandatory datapoints required for collection are streamlined and more clearly defined. Further, data curation and collection processes must be compatible with the workloads and expertise of clinicians, and additional training should be provided where appropriate.
Importantly, the report also stresses that there must be robust measures in place to protect patient data privacy and confidentiality. Controversy around data privacy has recently featured among headlines with the announcement of NHS’s federated data platform contract, highlighting the importance of transparent communication regarding patient data to increase participation, trust, and public confidence.
The report’s recommendations include:
- NHS trusts must improve manual data curation and collection processes and ensure these processes are compatible with current workloads and expertise of clinicians.
- NHS trusts should leverage the expertise and capacity of commercial organisations to support complex data curation.
- All industry partnerships must be rooted in an ethos of trust and transparency, with the purpose and benefits of data collection being clearly communicated to patients, public and staff.
- NHS England should consider implementing a patient reported outcomes measure (PROMS) strategy for cancer treatments across the NHS.
- Data collection should become a core component of clinician workflows. To facilitate this, the mandatory datapoints required for collection by national datasets need to be streamlined and more clearly defined to maximise benefit.
- Clinicians should be able to readily access nationally collected cancer datasets, particularly the data pertaining to their trust.
Rt Hon Stephen Dorrell, PPP Chair, said: “This report explores the potential of using real-world data already held by the NHS on its cancer patients to fuel life-saving cancer research and provide nationwide insight into care. It highlights the importance of utilising the expertise and capacity of industry partners for the high-quality curation of the nation’s cancer data, with mutual benefit for the workforce, patients, and researchers.”
“As a society, we are missing opportunities to identify and use learnings from the experience of people with cancer to improve care and research,” said Adam Manhi, Head, Strategic Partnerships, Flatiron Health UK. “At Flatiron Health UK, we are working with partners all across the UK healthcare ecosystem, including patients and the public, to transform the routinely collected health data on a cancer patient’s journey into evidence that can improve the treatments and quality of life for people with cancer.”
Flatiron sponsored the roundtable and supported the production of this report. This report was authored by Mary Brown, Senior Policy Analyst, Public Policy Projects and is part of Public Policy Projects’ (PPP’s) Cancer Care Delivery Plan.
In 2024, Public Policy Projects will be convening leading health professionals from across the oncology and cancer ecosystems, as part of the 2024 Cancer Care programme, and will explore the relationships between the major institutions and organisations responsible for delivering quality cancer care, including ICSs, Cancer Alliances, Imaging and Pathology Networks, Health Innovation Networks, Trusts, academia and researchers, the voluntary sector, and the private sector.
For more information on how to get involved in PPP’s 2024 Cancer Care programme, please contact Willy Morris at firstname.lastname@example.org
** While Flatiron Health UK contributed to convening the panel and topics for discussion, this report is not an endorsement of Flatiron Health UK. Although this roundtable was chaired by Dr Claire Bloomfield, this is also not an endorsement of NHS England.