Cathie Sudlow

Professor of Neurology and Clinical Epidemiology | Director of Usher Institute | Head of School, Population Health Sciences

Biography

Background

Cathie Sudlow is Chair of Neurology and Clinical Epidemiology at the University of Edinburgh, Director of the Usher Institute, Head of the School of Population Health Sciences and of the Director of the UKRI Adolescent Health Study. She was previously the Head of the Centre for Medical Informatics at the Usher Institute.

Until 2024, she was Chief Scientist and Deputy Director of Health Data Research UK, and Director of the British Heart Foundation Data Science Centre.  She was also the first Research Director for HDR UK in Scotland.

As a neurology specialist doctor with over 30 years working in the NHS, Professor Sudlow’s clinical work has focused mainly on the assessment and treatment of patients with suspected stroke.

Professor Sudlow’s research interests have always been firmly embedded in the world of big data. Over the last 15 years, her focus has been on leading large-scale, collaborative, open-science initiatives that enable a better understanding of the causes and consequences of health and disease across the life course, leading to new and improved approaches to prevention, diagnosis and treatment.

From 2011 to 2019, as Chief Scientist for UK Biobank, she led efforts to follow the health of UK Biobank participants through linkage to national health datasets. From 2020, she worked with NHS Digital (and then NHS England) to develop NHS England’s first secure data environment to hold and enable access for research to linked health data from multiple sources for the whole population of England.

In 2023, Professor Sudlow was commissioned by the Chief Medical Officer for England, the UK National Statistician and NHS England to undertake an independent review of the UK-wide health data landscape. “Uniting the UK’s Health Data: A Huge Opportunity for Society” was published in November 2024, it sets out a bold vision for how the barriers and inefficiencies that currently delay the safe and secure use of health data to improve lives can be overcome, with key recommendations to transform the health data ecosystem.  

Cathie is a Fellow of the Academy of Medical Sciences and of the Royal Society of Edinburgh and Honorary Fellow of Health Data Research UK (HDR UK). She was awarded an OBE for services to medical research in 2020.

Research summary

Large scale, collaborative, open, team science has been a common thread throughout my career. Population based epidemiology, health data science, linking ‘omics’ rich resources to health data and enabling access to large-scale health data for research have been major areas of focus over the last 12 years.  

My leadership of strategic initiatives has had impacts on: global open science through the establishment of large scale, health data research resources (e.g., first-ever trusted research environment for English whole population health linked multisource health data on >55M people; UK Biobank); health policy through advising UK Government and other national bodies on health data research infrastructure needs, COVID-19 mass population testing, vaccine safety, future of UK clinical trials, AI and regulatory science; and understanding, prevention and treatment of vascular diseases, dementia and other age-related health conditions through international genetic studies, randomised trials, large-scale meta-analyses and whole UK population research with linked health data.  

Health Data Research UK (HDR UK) 2022-2024 

My track record in leading major health data-driven initiatives led to my appointment as Chief Scientist and Deputy Director of Health Data Research UK, the UK’s national institute for health data science, where I had a major influence on Institute-wide strategy and priorities.  

British Heart Foundation (BHF) Data Science Centre, Health Data Research UK (2020-24)  

As its inaugural director, I established and led the BHF Data Science Centre, a UK-wide initiative which aims to mobilise the large-scale data and enable the data science capability to address major cardiovascular research challenges (https://bhfdatasciencecentre.org/). Since launch in January 2020, the Centre has:  

(i) recruited a core team of 30+ staff;  

(ii) built partnerships with national NHS bodies and health data custodians across the UK’s four nations, cardiovascular researchers and clinicians, patients and the public, BHF and other charities, and life sciences companies (Google Health, Verily, Microsoft Research and others);  

(iii) recruited a thriving team of interdisciplinary, internationally recognised Associate Directors and a Deputy Director to lead six thematic areas and Diabetes and Stroke Data Science Catalysts, and to convene UK-wide and international stakeholders to identify challenges, set priorities and co-produce solutions;  

(iv) assembled a team of eight health data engineers at varying career levels to underpin a novel and much needed career development pathway and to provide essential support in data curation across all activities;  

(v) worked with NHS Digital (now part of NHS England) to co-develop England’s first-ever trusted research environment (TRE), enabling secure access to whole population, diverse linked health data on >55M people for an inclusive consortium of >350 researchers from >50 UK research and NHS organisations, generating research insights at pace to inform healthcare and health policy  

(vi) worked with the University of Swansea to develop the UK’s first secure data platform to support the storage, linkage to NHS data and analysis of UK cardiometabolic cohort studies;  

(vii) increased the BHF’s initial £10 million investment by 4-5 fold through leverage and contributions in kind; and  

(viii) ensured that all data curation and analysis code, phenotype algorithms and metadata generated through activities it coordinates were made publicly available via Github and HDR UK’s Innovation Gateway and Phenomics Library. Through coordinating access to linked data in the NHS England TRE, along with TREs in Wales, Scotland and Northern Ireland, the Centre has enabled whole UK population research, supported the UK Government Chief Scientific Adviser’s Covid-19 National Core Studies and created enduring infrastructure for large-scale, data-driven health research.  

Health Data Research UK Research Director (2018-2020)  

As one of six initial HDR UK research directors, I shaped HDR UK’s scientific strategy, established and co-led HDR UK’s Phenomics scientific priority (defining health and disease through combining different data sources), facilitated national research in computable phenotypes and text analytics, and co-ordinated four major research programmes (public health, scalable phenotyping, large scale genomic computational methods, precision therapeutics) across six major Scottish universities.  

University of Edinburgh Research Centre Leadership (2017-2019)  

From 2017-2019, I directed the University of Edinburgh’s Centre for Medical Informatics. Under my leadership, the centre became one of the highest rated in the College of Medicine’s staff satisfaction survey, attracted substantial new funding, established new research and teaching initiatives and expanded from 30 to >100 staff.  

UK Biobank (2011-2019) 

For eight years, I was Chief Scientist of this prospective population-based cohort of 500,000 UK adults with data and bio-samples of unparalleled scale and complexity. From 2012, this research resource has been accessed by tens of thousands of bona fide researchers worldwide, leading to 1000s of publications and enabling scientific discoveries to improve human health. I established and led participant follow-up through national health data linkages, developed methods for ascertaining health-related outcomes, and provided scientific leadership of media and participant communications, multimodal data quality, academic and industry research liaison, and the development and evaluation of procedures for feedback of imaging incidental findings.  

MRC Dementias Platform UK (2014-2019)  

£ multi million programme to enhance UK cohorts to better understand and develop and test novel interventions for dementia. I led the development of internationally widely used resources that use linked healthcare data to define neurodegenerative disease outcomes (e.g., in UK Biobank and the Million Women Study).  

ROADMAP: Real World Outcomes across the Alzheimer’s Disease (AD) spectrum (2016-2018)  

EU Horizon 2020 Innovative Medicines Initiative programme on use of real-world data to benefit AD patients and carers. In partnership with EFPIA and academic partner institutions across Europe, I led work to identify and prioritise AD outcomes from the pre-symptomatic phase to dependency and death.  

Genetics and epidemiology of stroke and its subtypes (2000-)  

I established and led: the Edinburgh Stroke Study (data & samples, including for genomics, from >2000 stroke/transient ischaemic attack patients); international data pooling efforts and systematic reviews to improve understanding of stroke subtypes; studies showing risk of sporadic stroke from variation in familial cerebral small vessel disease genes; contributions to major worldwide stroke genetic loci discovery efforts (e.g., Wellcome Trust Case Control Consortium, METASTROKE, International Stroke Genetics Consortium).  

Randomised controlled trials (2000-)  

I have been co-investigator, steering committee chair or member, and data and safety monitoring board member for several large, multicentre randomised trials in stroke, vascular and neurodegenerative diseases.  

Antiplatelet drugs and vascular disease (1997-2002)  

As a clinical fellow and DPhil student, I coordinated the Antithrombotic Trialists’ Collaboration meta-analyses, the largest-ever collaborative meta-analysis of randomised trials at the time. This assessed and demonstrated the balance of benefits versus hazards of antiplatelet drugs and drug combinations for prevention and treatment of major vascular diseases.  

Global epidemiology of stroke (1990s-)  

My earliest collaborative, data pooling project was to establish and apply methods for comparing stroke incidence globally, which have since been extended and refined by others but are still used and cited widely. 

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