A National Initiative in Data Science for Health: An Evaluation of the UK Farr Institute

Abstract

Objective: To evaluate the extent to which the inter-institutional, inter-disciplinary mobilisation of data and skills in the Farr Institute contributed to establishing the emerging field of data science for health in the UK.

Design and Outcome measures: We evaluated evidence of six domains characterising a new field of science: defining central scientific challenges, demonstrating how the central challenges might be solved, creating novel interactions among groups of scientists, training new types of experts, re-organising universities, demonstrating impacts in society. We carried out citation, network and time trend analyses of publications, and a narrative review of infrastructure, methods and tools.

Setting Four UK centres in London, North England, Scotland and Wales (23 university partners), 2013-2018.

Population Subsets of the UK’s 65 million population with health records accessible for research.

The Farr Institute published a research corpus around a central scientific challenge, demonstrating insights from electronic health record (EHR) and administrative data at each stage of the translational cycle in 593 papers with at least one Farr Institute author affiliation on PubMed. Sample sizes showed some evidence of increase but remained less than 10% of the UK population in primary care-hospital care linked studies. The Farr Institute established the first four ISO27001 certified trusted research environments in the UK, and approved more than 1000 approved research users, published on 102 unique EHR and administrative data sources and established open platforms for the scalable re-use of EHR phenotyping (>70 diseases, CALIBER). The co-author publication network expanded from 944 unique co-authors (based on 67 publications in the first 30 months) to 3839 unique co-authors (545 papers in the final 30 months). 4/5 Centres established 27 new faculty (tenured) positions, 3 new university institutes, and 3 new master’s courses, training >400 people at master’s, short-course and leadership level and 48 PhD students. There were over 2300 citations for the 10 most cited papers and Farr research informed eight practice-changing clinical guidelines and policies relevant to the health of millions of UK citizens.

Conclusion: The Farr Institute played a major role in establishing and growing the field of data science for health in the UK, with some initial evidence of benefits for health and healthcare. The Farr Institute has now expanded into Health Data Research UK but a key challenge is to network such activities internationally.

What is already known:

• National research initiatives in data science for health are under way in several countries seeking to harness insights from electronic health record (EHR) and administrative data at regional and national scale for patient and public benefit.

• One approach to grow this emerging field, adopted by the UK, is to establish a dedicated national research institute, the Farr Institute.

• We do not know how effective such initiatives are: multi-centre, inter-disciplinary research initiatives are common, but there is a lack of research evaluating such initiatives (in general) and national research institutes (in particular).

• The Farr Institute ran from 2013 until 2018 when its larger-scale successor, Health Data Research UK, was established.

What this study adds:

• We provide a framework of six domains relevant for evaluating new inter-institutional, inter-disciplinary initiatives seeking to establish and grow an emerging field of science: defining central scientific challenges, demonstrating how the central challenges might be solved, creating novel interactions among groups of scientists, training new types of experts, re-organising universities, demonstrating impacts in society.

• We show that the Farr Institute created new activities in and across each of the six domains for developing a distinctive research field.

• The Farr Institute demonstrated the ability of multiple UK health research funders and multiple universities to partner in mobilising data, methodology and expertise across disciplines, organisations and information governance domains, resulting in a larger scale of research and improved methodology.

• We have demonstrated globally relevant challenges and opportunities for developing data science for health across institutional and disciplinary barriers, consistent with the need for big investigation not simply big data.

Keywords: Health Informatics, Electronic Health Records