Building and expanding Data as a Service
- INSIGHT has continued to build and expand Data-as-a-Service as a core Hub product. The Hub generated wide-ranging interest as a result of 12 platinum-rated datasets featured on the Innovation Gateway and detailed on the INSIGHT website. Here the Hub has a dedicated research user area, complete with information and guidance for prospective applicants. The Hub has worked with multi-sector research users across the pharma and tech industries, SMEs, the charity sector, NHS and global policy. It has extended expertise and advice, and supported the submission of the now 11 Data Use Applications to INSIGHT. Each of these applications are progressing at different stages of access management, negotiation, data licensing and delivery.
Data Use Exemplar: Showcasing the potential of NHS and industry collaboration
- INSIGHT’s approach to successive Data Use Applications has been informed by the provenance of the Hub’s very first Data Use Exemplar in January 2021, which focussed on predicting the immediate impact of the COVID-19 pandemic lockdown on neovascular age-related macular degeneration and associated visual morbidity for patients at Moorfields Eye Hospital and University Hospitals Birmingham. The data use case was led by NHS and university partners at Moorfields and in Birmingham as a way of contributing to addressing the impact of the pandemic on the ability of the NHS to continue to treat and care for patients.The Hub’s industry partner, Roche-Genentech, provided Real World Data analytical expertise for this use case and collectively the outcome informed NHS service recovery planning at both Trust sites in summer 2021. INSIGHT published an article about this project in the British Journal of Ophthalmology in September 2021 exemplifying how access to patient data and the resultant power of analytics could proactively inform the triage and resumption of treatment for patients suffering from AMD.
- With the provenance of our first Data Use Exemplar to serve NHS patients, through this case study we want to provide a focus on INSIGHT’s work with an industry research userto illustrate Hub impact and sustainability. Our second Impact Case Study provides a focus on INSIGHT’s work with small and medium-sized enterprises (SMEs) research users.
Engagement with global industry
- The industry research user submitted two Data Use Applications to INSIGHT in 2021 for bespoke (custom) age-related macular degeneration (AMD) and diabetic macular oedema (DMO) datasets curated by Moorfields Eye Hospital NHS Foundation Trust.
- INSIGHT’s approach and engagement with the industry research user involved in-depth working sessions with their data scientists and research leads to hone and refine the ‘data-ask’ from their Data Use Application. This focus on a subset of images and linked clinical data formed a prerequisite to supplement formal structured negotiations chaired by senior executives from the company and Moorfields.. The engagement yielded important commercial knowledge and insights about industry data standards for research.“We believe these [Data Use Applications] are groundbreaking and will generate high value and benefit, not only to us and the scientific community, but most importantly to patients and the public.”Industry Research User, March 2021
- In the engagement with the industry research user, the Hub supported the company’s decision-making processes with important insights on the use of large-scale anonymised NHS patient data and notably our guiding principle of realising the power of data access for patient benefit. The Hub’s extensive work with patient and public groups under the INSIGHT PPIE strategy since 2020 informed the dialogue with the company and aided understanding of the responsibilities held by NHS data controllers for the trusted stewardship of patient data.This was supplemented by the advisory recommendation on the Data Use Application by the independent Data Trust Advisory Board set up through the INSIGHT partnership with the charity Action Against Age-related Macular Degeneration and the Open Data Institute. By virtue of this integral part of engagement, we successfully reached agreement with the industry research user on the principle of ‘non-exclusivity’ in the licensing of data. This ensured that the Hub could optimise further and future Data Use Applications from other multi-sector research users for the same data without hindrance, thereby maximising patient benefit and value return to the NHS.“We have appreciated the professional and considered approach taken in engagement and discussions with Moorfields… Our mutual dialogue has helped to inform and refine our research data needs for the development of new therapies and digital integrated solutions for these unmet medical needs.” Industry research user, October 2021
- INSIGHT worked in accordance with corporate governance requirements at Moorfields that included Board-level consideration and consent on licensing NHS patient data for fair value return through safe, secure and transparent processes. The leadership, advice and expertise of senior executives and Non-Executive Directors at the Trust was invaluable, and it further enabled engagement with Moorfields Membership Council, which comprises patients, staff and members of the public that live and work in the communities that the Trust serves.
- How industry assess the applicability and value of large-scale data for commercial research purposes is different from other evaluation mechanisms deployed by companies, for example in commissioning (or sponsoring) clinical trial recruitment for drug development. The learning we garnered through negotiations with the industry research user informed the Hub’s ‘industry playbook’ for market engagement with other research users.
- In December 2021, a Data Licence Agreement was established between Moorfields and the industry research user for the AMD dataset.This first industry Data Licence Agreement secured a high-value return to the NHS, which contributes to investment in advancing AMD patient services at the Trust and provides a cornerstone for Hub sustainability for the next financial year and into 2023-24.
- INSIGHT’s extensive work and engagement on this first industry Data Use Application has provided a ‘tried and tested’ pathway that we have since deployed in progressing negotiations and licensing for the other Data Use Applications.
- We are confident in the provenance and quality of the data assets that have been developed and curated through INSIGHT and we are proud of the trusted NHS partnership we have built. Reflecting the considerable level of interest shown by industry and other multisector users, INSIGHT is in a formidable position to continue to grow its user base over the coming years. We believe this will generate benefits to serve patients, provide a robust value return for the NHS, and secure a healthy and sustainable base for the Hub as the world’s largest and trusted ophthalmic imaging bioresource.
Insights from linking police domestic abuse data and health data in South Wales, UK
22 January 2024
This study from Kennedy et al was selected by the HDR UK Impact Committee.
Understanding genetic diversity through RNA data to inform future research
22 January 2024
This study from Fachrul et al was selected by the HDR UK Impact Committee.