Working in Partnership to Unlock the Power of NHS Data and Transform Cancer Research and Care
Nearly 1 in 2 people will be diagnosed with cancer during their lifetime and survival rates in the UK are falling behind other comparable countries. Given the scale and impact of cancer, research has huge potential to transform care and outcomes. High-quality research depends on the availability of high-quality data, which provides a complete and recent picture of the patient journey; is accurate and traceable to source; and is representative of the broader population. Lower-quality data serves limited research questions or may even lead to unreliable insights.
While clinical trials are crucial for generating evidence, they often do not reflect the broader cancer population or real-world settings. Data collected in routine clinical practice (“real-world data”) can address these limitations. The NHS is a valuable source of real-world data, which is representative and follows patients’ journeys across their lifetimes. However, NHS data is fragmented across systems and a large proportion is unstructured (e.g. clinical letters, pathology reports). It needs to be consolidated, standardised and curated to make it ‘research-ready’. Many NHS Trusts lack the resources to do this at scale. This means that data on cancer patient journeys and experiences are a significant underutilised resource that could make a real difference to patient care and outcomes if accessed and analysed appropriately.
In June 2023, Leeds Teaching Hospitals NHS Trust (LTHT) announced its partnership with Flatiron Health UK to improve the quality and availability of its data on cancer patients. With patient and public support, LTHT and Flatiron are creating high-quality, fully anonymised and research-ready datasets which can be used to advance cancer research and care. Furthermore, this innovative partnership represents one way to improve the service the NHS delivers against a backdrop of budget constraints.
The partnership’s success is founded on three core components:
1. PPIE and Staff Engagement: LTHT and Flatiron have led a comprehensive programme of engagement with patients, the local community and LTHT staff to explain the collaboration and gather feedback. To ensure broad engagement, including hard-to-reach groups, they have used a range of tools including posters, leaflets, letters, surveys, workshops, one-on-one meetings and drop-in sessions. To date, the team have sent out over 20,000 letters to allow patients to opt out. They have seen only a 4% opt-out rate, demonstrating strong local support for the partnership.
2. NHS Health Research Authority approval: The management of data within the partnership has received full approval from the NHS Health Research Authority (HRA), including the Confidentiality Advisory Group and the Research Ethics Committee. This is testament to the partnership’s commitment to keep confidential patient information safe and secure and ensure data is used only in the public and patient interest. LTHT and Flatiron have co-designed a data flow that ensures only anonymised data is accessible to approved researchers through Flatiron’s Secure Data Environment (“SDE”), which is hosted in the UK. The Flatiron team has implemented a robust and transparent process to oversee all requests to access the SDE, which includes review by an independent panel of clinicians, patients and lay representatives. All outcomes are published on Flatiron Health UK’s website.
3. Fair Value Exchange: LTHT and Flatiron have co-developed a fair value exchange to ensure both parties see tangible and fair value from the public-private partnership. LTHT receives access to high quality, curated datasets on their own cancer patients, refreshed regularly. LTHT can use this to enhance patient care and management; more effectively identify patients for clinical trials; and enable comprehensive evaluation of care delivery. LTHT also gets access to Flatiron’s global datasets to support their research ambitions. In addition, LTHT receives a proportionate share in Flatiron’s revenue, which LTHT is investing into improvements in cancer care based on data insights. Furthermore, the partnership is cost neutral for LTHT, with Flatiron making use of existing Trust systems and infrastructure, and providing the investment needed (e.g. IT resources for data integration). In return, Flatiron receives access to routinely-collected cancer clinical data, which it curates in a safe and secure environment. Subject to a research oversight process, Flatiron provides researchers with access to this anonymised, research-ready data to advance global cancer research and care.
Keeping patients and the public at the heart of the partnership; ensuring the safe and secure handling of patient data; and making sure the NHS benefits fairly have been the key ingredients of this successful NHS data partnership. This represents an endorsed blueprint for future NHS Trust-Flatiron partnerships, which can be tailored based on an individual Trust’s needs. Flatiron is widening the impact of UK real-world data through similar partnerships with other NHS Trusts, at no cost to the NHS, to be announced soon. Together we can improve and extend the lives of every person living with cancer. We are excited to explore how we can work with other partners across the ecosystem to achieve this.
To learn more, listen to Flatiron Health UK’s talk at the Integrated Care Forum on 25th September at 10.55am. They’ll also be at Stand G74 - drop by and say hello!