Through access to 2.5 million de-identified patient records, the Hub combines robust data infrastructure and access through its Trusted Research Environment with the analytical capability and technical expertise to offer the following services (Figure 1) to clinicians, researchers, and scientists:
This case study sets out the cumulative impact of a series of investments by Discover-NOW:
- Development of a feasibility, patient identification and recruitment service offer
- A commercial collaboration agreement with NorthWest EHealth (NWEH), an established global clinical trials software company, to develop a shared pipeline of commercial opportunities. Crucially, Discover-NOW benefits from the experience and credibility of this collaboration and can also learn from this experience in delivery.
- An early-stage feasibility and recruitment platform using FARSITE, a tool developed by NWEH which allows GP practices and industry to assess the feasibility of their protocols and identify patient cohorts to participate in research studies.
- A partnership with Imperial College Healthcare NHS Trust and the Care Information Exchange (CIE), hosted by Patients Know Best, that provides the personal health record for patients and service users in North-West London.
- Acceleration of the Northwest London Health Research Register (the Register) through integration with the CIE and digital sign-ups.
This case study outlines both developments, including early-stage impacts and plans for scaling.
Overview of the feasibility service
The feasibility service uses FARSITE, a browser-based tool which makes searching patient records easy and intuitive via two interfaces; one for feasibility searches and the other for patient identification and recruitment directly from the patient’s own GP (Figure 2).
The service has been developed in partnership with NWEH and is underpinned by a shared vision to use routinely collected healthcare data to accelerate the delivery of clinical evaluations. It is underpinned by robust information-sharing agreements and technical controls to bring new products and interventions to patients faster (Figure 3).
One of the key advantages of the partnership with NWEH is that it grows the scale and speed of access to patients for clinical trials and research across not just NWL, where Discover-NOW is based, but also across Greater Manchester.
This scaling is particularly important where cohorts within individual geographical locations may be comparatively small. It also demonstrates how joining up skills, capacity and expertise across academia, industry and the NHS can significantly improve the speed with which treatments and innovations can be tested and improved.
Moreover, we have established a commercial collaboration agreement between Discover-NOW and NWEH which underpins our intent to leverage commercial opportunities to support research and health intervention across the two regions.
Supported by the London-wide Local Medical Committee, to date 70% of GP practices across NWL have signed up on FARSITE, with access to over 1.2 million patient records available to search and identify eligible patients to take part in clinical research and health interventions. This enables FARSITE to address the challenge of slow, inefficient, expensive protocol development and feasibility, and attracts commercial research as shown in Figure 4.
Supporting population health management in North West London
Although developed to enable the faster evaluation and uptake of clinical interventions, FARSITE has potential to support local priorities which includes developing an approach to population health management (PHM) across the NWL Integrated Care System (ICS).
Addressing health inequalities and improving care are critical elements of the UK government strategy to address the backlog in care due to the SARS-Cov-2 pandemic. With Discover-NOW’s partners across NWL, the Hub is exploring how it might support this work by:
- Allowing quick and flexible searches or ‘case finding’ of patient populations with defined characteristics using natural language processing.
- Supporting service transformation at a Primary Care Network (PCN) level through identifying patient cohorts whose health outcomes may be improved.
- Enabling deep dive at practice/borough-level to inform health inequalities supporting PHM and capability building at a system level.
- Using this, in combination with the Discover-NOW de-identified health records to track and evaluate PHM interventions over time.
We are currently using these tools as novel ways for case finding across NWL ICS, a fundamental part of the PHM approach:
- Brent Health Matters programme, which provides a foundation for the primary care development programme for patients with T2D in Brent (Figure 5).
- The implementation of Inclisiran, working with NWL ICS to identify eligible patients at risk of developing cardiovascular disease to benefit from this novel treatment developed by Novartis and approved by NICE (Fig. 6).This novel approach could apply to any new treatment by accelerating the case finding and spread of adoption across NWL.
The NWL Health Research Register (the Register): An approach to patient consent management
Over the past two years, Discover-NOW has developed a consent-to-contact offer, known as the NWL Health Research Register, which acts as the trusted gateway for both researchers and patients.
This service enables researchers to identify cohorts of patients that meet set inclusion criteria for a study. If consent has been given, the Discover-NOW team can contact the patient directly speed up the feasibility, identification and recruitment process (see Figure 7).
The Register is hosted by Imperial College Healthcare NHS Trust and integrated now with the NWL CIE, which acts as the personal health record for the NWL population.
The integration with the CIE has enabled digital consent and grown the consented population reached to over 50,000 people – a growth of over 150% since 2019, made possible by the HDRUK investment. The development of the Register has been done in consultation with patients and now provides a single source of consent across NWL.
Crucially, individual registrations are linked with the matching record in the de-identified Discover dataset. This enables researchers to understand how the volunteers are split by local authority, deprivation decile, age, gender, ethnicity, and long-term condition (Figure 8). This way, researchers can easily see the potential value for planned research.
The register is used to speed up recruitment to research studies. It is starting to have a meaningful impact on how we identify and recruit patients to studies in the following ways:
- The NWLHRR (‘the Register’) supported the recruitment of eligible patients to participate in a COPD study sponsored by Royal Brompton NHS Trust.
- The NWLHRR supported the co-design of Type 2 Diabetes (T2D) risk prediction tool across the NWL T2D care pathway in a study sponsored by the NHS, SMEs, the pharmaceutical industry, and academia.
- The NWLHRR gave the NWL population the opportunity to contribute to research for CovidLife and COVIDENCE national surveys sponsored by academic and charity bodies.
Impact and benefits
The combination of HDRUK’s investments in the Register and the deployment of FARSITE across primary care has enabled Discover-NOW to develop novel approaches to a feasibility service and a patient identification and recruitment service. We have a developing pipeline of work for these services. This includes recruitment to a frailty study and a respiratory syncytial virus study sponsored by academic bodies and industry respectively.
We have also started to explore the benefit and impact of using these tools and services to support an approach to PHM in the NWL ICS. The timing and potential impact is great given the emerging post-pandemic prominence of the Core20PLUS5 framework by NHS England, an approach to reducing health inequalities. This approach defines a target population cohort based around an analysis of differential access and outcomes for the bottom quintile on the indices of multiple deprivation (IMD). This requires access to integrated data and services being made available by Discover-NOW.
We have also identified a series of strategic opportunities for Discover-NOW which involve scaling and development with further investment support:
- The CIE is being deployed across London and there is also an opportunity to scale the Register.
- Promoting the use of and access to the patient identification and recruitment service to a wider range of academic and clinical researchers.
- NWEH and Discover-NOW are extending the scale and scope of FARSITE to also search on secondary care datasets. This will augment the potential for health improvement and commercial revenue generation.
- NWEH and Discover-NOW are named partners of the Imperial Biomedical Research Centre (BRC) bid for 2022 to support PHM and promote commercial research opportunities.
- Discover-NOW is facilitating discussions with other London ICS areas regarding the expansion of FARSITE.
The HDR UK funding has enabled the Hub to:
- Invest in data, infrastructure and technology,
- Develop the service offer,
- Build public trust, and
- Grow the Hub’s people and partnership capabilities.
We believe this will support the future sustainability of the Hub.
Investment in FARSITE, the Register that enable a novel feasibility and patient identification and recruitment service underpinned by the commercial collaboration agreement with NWEH are all important to support this ambition.
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5 November 2019
Guest Blog: Dr Axel Heitmueller, Discover-NOW Hub Director talks about the importance of understanding people's views and expectations about the use of health information to build trust.