UK Longitudinal Linkage Collaboration’s Post

What’s stopping the UK from making the most of its health data? The independent review, 'Uniting the UK’s Health Data: A Huge Opportunity for Society,' led by Prof. Cathie Sudlow, explores the barriers to accessing and using health data effectively. Commissioned by the Chief Medical Officer for England, the UK National Statistician, and NHS England’s Director for Transformation, the review lays out five key steps to improve how health data supports research and care. Here’s a quick look at the recommendations: - Recognise health data as critical national infrastructure. - Create a national health data service in England. - Improve patient and public engagement. Prof. Sudlow puts it plainly: “We are simply not maximising the benefits to society from the rich abundance of health data in the UK.” 📖 Read the full report to see what changes could make a difference: https://lnkd.in/eW3jgjTY #HealthData #SudlowReview #Innovation

For everyone working with #nhsdata both inside and outside the service and interested in #transformation. The #Sudlowreview is the best appraisal I've seen of the state of NHS and health and care data now, and where improvements are needed to support #ukhealthdatasuperpower status, harnessing the combined power of ~70m pseudonomised nhs patient health record data to inform better integrated patient care, research, and generation of #realworldevidence for life science innovators. Prof Sudlow summarises as follows: “We are simply not maximising the benefits to society from the rich abundance of health data in the UK. Far too often research about health conditions affecting millions of people across the UK is prevented or delayed by the complexity of our data systems. We are letting patients and their families down as a result. This review shows that getting this right holds a great prize, for our own care and for an effective NHS. We need to recognise our national health data for what they are: critical national infrastructure that can underpin the health of the nation.” Chapter 3 is especially interesting. It reviews a comprehensive array of existing data sources of collected health and care data. It's clear we are not short of data, but currently don't make it easy to follow a patient on their health journey through the data, and combine disparate data to inform improvement. There are clear conclusions and 5 recommendations that will support the #nhs10yearplan and #lifesciencestrategy as well as wider #economicrecovery led by our health and life science sectors. A must read ....... We have great raw ingredients to be one of the best places globally to support research and innovation in health and life sciences. This report sets out the challenges and opportunities to make the #ukhealthdatasuperpower achieve it's potential, with benefits to health of the population and the economy. Let's do this.....#healthcareinnovation Cathie Sudlow Christopher Whitty #criticalnationalinfrastructure

Major new report out making the case for overcoming the barriers and inefficiencies that currently delay the safe and secure use of health data in the UK to improve lives. The Sudlow review argues that the most powerful insights come from linking different sources of data together. But health and care professionals, researchers and policymakers face obstacles and delays in accessing, linking and analysing health data for crucial research https://lnkd.in/eJAAC2rv

'Uniting the UK’s Health Data: A Huge Opportunity for Society' is an independent review commissioned by the Chief Medical Officer for England, the UK National Statistician and NHS England’s National Director for Transformation. https://lnkd.in/etSVP_8j The Sudlow Review’s recommendations provide a pathway to establishing a secure and trusted health data system for the UK: Major national public bodies with responsibility for or interest in health data should agree a coordinated joint strategy to recognise England’s health data for what they are: a critical national infrastructure. Key government health, care and research bodies should establish a national health data service in England with accountable senior leadership. The Department of Health and Social Care should oversee and commission ongoing, coordinated, engagement with patients, public, health professionals, policymakers and politicians. The health and social care departments in the four UK nations should set a UK-wide approach to streamline data access processes and foster proportionate, trustworthy data governance. National health data organisations and statistical authorities in the four UK nations should develop a UK-wide system for standards and accreditation of secure data environments (SDEs) holding data from the health and care system. https://lnkd.in/etSVP_8j

The Sudlow review aligns well with one of our recommendations in the "Shape Research, Change Lives" project. https://lnkd.in/eViEDCPW We compared the research landscape to research priorities for individuals with Down syndrome (DS), Fragile X syndrome (FXS), and Williams syndrome (WS). Throughout we worked with an expert steering group and advisory groups with lived experience. Our Recommendation 3 is relevant here: Capitalise and optimise on datasets. Existing population-based datasets currently do not include diagnostic labels for DS, FXS, WS and other conditions. Diagnostic labels should be added to these rich datasets; this represents a long-term cost-effective solution to enable researchers and policy makers to answer questions prioritised by the community. Research groups should also collaborate to harmonise their data; this will ensure that sample sizes are sufficiently large to support robust findings. 

Fantastic to see Professor Cathie Sudlow's Review Uniting the UK's Health Data: A Huge Opportunity for Society being published today.   The review powerfully shows what we've long argued - the UK's health data is a critical piece of national infrastructure essential for both population health and economic growth. The gap between what we can do with data and what we are doing is widening – that is concerning.   ✅ The report's recommendations align strongly with our previous work: ✅ A joined-up strategy across fragmented systems ✅ Establishment of a National Health Data Service ✅ Better standards ✅ Proportionate governance ✅ Ongoing public engagement to build trust   These are all urgent and laudable aims that will hopefully inform Department of Health and Social Care and Department for Science, Innovation and Technology policy in due course.   During COVID, we proved that we could align organisations and use data at scale. We must not slip back. That's why we proposed a National Data Trust model that would: 1. Enable sustainable long-term investment 2. Break free from short-term funding cycles 3. Create the right structure for public-private collaboration 4. Help attract and retain top talent   The review reinforces our view that the right organisational form - one that sits outside government but with government involvement - is crucial. This would enable private investment while maintaining robust governance and public trust.   We've set out a detailed blueprint in A New National Purpose: Harnessing Data for Health https://lnkd.in/eShJKz96. Between this review, the TBI proposal, and other contributions, the solutions are clear. High time to turn these proposals into action.   https://lnkd.in/e_pjkgm9 Tony Blair Institute for Global Change Henry Li Dr Charlotte Refsum Sam Sharps Benedict Macon-Cooney Health Data Research UK (HDR UK) Richard Torbett MBE Darcy Ward Rebecca Cosgriff

The Sudlow Review is a call to action for policymakers and healthcare leaders, and emphasises that health data should be seen as critical national infrastructure requiring careful leadership and vital investment. The Sudlow Review’s 5 recommendations provide a pathway to establishing a secure and trusted health data system for the UK: 1. Major national public bodies with responsibility for or interest in health data should agree a coordinated joint strategy to recognise England’s health data for what they are: a critical national infrastructure. 2. Key government health, care and research bodies should establish a national health data service in England with accountable senior leadership. 3. The Department of Health and Social Care should oversee and commission ongoing, coordinated, engagement with patients, public, health professionals, policymakers and politicians. 4. The health and social care departments in the four UK nations should set a UK-wide approach to streamline data access processes and foster proportionate, trustworthy data governance. 5. National health data organisations and statistical authorities in the four UK nations should develop a UK-wide system for standards and accreditation of secure data environments (SDEs) holding data from the health and care system. Worth a read and to consider how you can get involved in the conversation #lifesciences #visions4health #marketaccess #nhs #pharma

In case you missed it, the Sudlow Review: "The review takes a UK-wide approach in mapping health-relevant data across the four nations, including a background of the various sources and types of health-relevant data, how health data could generate insights for patient and public benefit, and priority areas of action to address current barriers." An important document and very well done.

Having just listened to the launch of the excellent #SudlowReview report on the linking and use of data for the benefits of society (see here via Health Data Research UK (HDR UK) https://lnkd.in/ejAr7cbY ) my own personal reflection is that it is enormously encouraging to see the needs and priorities of patients, the public and society move into the centre of the frame for how we move forwards as a nation. It has taken a lot of hard work to get to this point and there have been a number of misfires along the way, but this is most certainly a much better place to start the conversation and to build an approach that works for citizens, for health and for research. Well done Professor Cathie Sudlow FMedSci, the review team and all those who contributed. Official The Academy of Medical Sciences response below.  Professor James Naismith FMedSci, Vice-President (Non-Clinical) at the Academy of Medical Sciences, said: “The publication of the Sudlow Review marks a significant step towards making health data work better for the UK. Strong, trustworthy data systems, designed and delivered with input from patients, researchers and healthcare providers, will lead to better care and support innovations in treatment and prevention. Embedding an effective health data infrastructure is crucial to building an NHS that is fit for the future.    “Success depends on active and equitable partnerships. Agreements between the NHS and its partners must ensure that everyone, especially patients and the NHS, reap the benefits of harnessing data.  “The Academy of Medical Sciences and its Fellows will support these changes, bringing expertise and experience to help develop data systems that work for everyone. The Sudlow recommendations can make the UK’s health data a truly national asset, improving both patient care and driving economic development.”

Work in healthcare or with healthcare data? The Health Data Research UK (HDR UK) #SudlowReview 'Uniting the UK’s Health Data: A Huge Opportunity for Society' (https://lnkd.in/eBs5eN42) is a must read. Some non-headline insights- 💡 Most people readily accept the use of patient-level data for reasons beyond their direct care; 💡 Low percentage of outpatient episodes that are assigned diagnosis and/or procedure codes (3–4%); 💡 80% of healthcare data that are unstructured represent a significant, under-utilised resource. "Far too many lives are unnecessarily lost or ruined because of blockers or delays in safe and secure access to, linkage and analysis of existing health data-Professor Cathie Sudlow, OBE" ▶ Ensuring healthcare data accuracy at source is an imperative and must be a focus for providers going forwards to realise downstream benefits.