Open Life Data to support healthy longevity for all
Authors: Damian Green, James O'Shaughnessy, Gavin Starks, Richard Sloggett, Iain Buchan, Tina Woods
Journal: The Lancet Healthy Longevity (2021)

Building on The Health of the Nation report,1Green D Filkin G Woods T Our unhealthy nation.Lancet Healthy Longev. 2021; 2: e8-e9Summary Full Text Full Text PDF Scopus (1) Google Scholar the All-Party Parliamentary Group for Longevity is now engaging with the UK Government on how to improve Britain's health and reduce the grave inequalities laid bare by COVID-19.2Daras K Alexiou A Rose TC Buchan I Taylor-Robinson D Barr B How does vulnerability to COVID-19 vary between communities in England? Developing a small area vulnerability index (SAVI).J Epidemiol Community Health. 2021; (published online Feb 4.)http://dx.doi.org/10.1136/jech-2020-215227Crossref PubMed Scopus (8) Google Scholar The Levelling Up Health report, published on April 9, 2021, outlines plans to achieve the Government's manifesto commitment to add 5 years of healthy life expectancy while minimising health inequalities: HLE+5. To support these plans, the All-Party Parliamentary Group is developing the Open Life Data Framework3Longevity TechnologyOpen Life secures funding for longer, healthier lives.https://longevity.technology/open-life-secures-funding-for-longer-healthier-lives/Date: 2021Date accessed: March 16, 2021Google Scholar that will show how health and non-health data can be combined securely4McGraw D Mandl K Privacy protections to encourage use of health-relevant digital data in a learning health system.NPJ Digit Med. 2021; 4: 2Crossref PubMed Scopus (10) Google Scholar to improve health for individuals and populations by unleashing open innovation and civic action at scale. The framework will take relevant learning from Open Banking5Open BankingWhat is Open Banking.https://www.dgen.net/0/open-banking/Date accessed: March 16, 2021Google Scholar and Open Energy, while also recognising that health is more complex than the finance or energy sectors. Open Life will address the growing recognition by scientists and policy makers of the need to broaden the data ecosystem to encompass the wider determinants of health and leverage insights across the life course from a range of populations and systems. Current Government health-care priorities, policies, and investments continue to focus on the NHS. Although it is true the UK has so-called cradle to grave longitudinal datasets in the NHS, there is also a wealth of social and administrative data in the UK's place-based health systems—such as combined NHS, local government, social care and public health data (eg, Combined Intelligence for Population Health Action [CIPHA]) —that can be used to address the wider determinants of health and interdependent services, not just the 15% of outcomes reflected by NHS data.6Buck D Baylis A Dougall D Robertson R The Kings Fund. A vision for population health: towards a healthier future. The Kings Fund, 2018https://www.kingsfund.org.uk/sites/default/files/2018-11/A%20vision%20for%20population%20health%20online%20version.pdfDate accessed: March 16, 2021Google Scholar It is clear that with 85% of the determinants of our health lying outside health-care data, there is a need to focus on wider non-NHS health data encompassing behavioural, social, economic, and genetic factors, and social and administrative data in place-based health systems. Multimodal artificial intelligence (AI) and decentralised machine learning can find patterns in and across very large datasets7Lenz S Binder H Deep generative models in DataSHIELD.arXiv:2003.07775Date: 2020Google Scholar while also preserving individual privacy—through federated, secure ways—to analyse life data.8Xu J Glicksberg B Su C Walker P Bian J Wang F Federated learning for healthcare informatics.J Healthc Inform Res. 2021; 5: 1-19Crossref Scopus (12) Google Scholar However, when health and related data are linked at the individual level, a high degree of public trust is needed to use these data effectively. Technologies that bring algorithms to data instead of moving large amounts of sensitive data around might prove useful in this context. Discovering patterns from everyday life is crucial to advancing healthy longevity, including understanding the exposome9Vineis P Robinson O Chadeau-Hyam M Dehghan A Mudway I Dagnino S What is new in the exposome?.Environ Int. 2020; 143105887Crossref PubMed Scopus (19) Google Scholar of complex exposures from multiple factors (such as diet, physical activity, sleep, and social interactions) and how we respond to them.10Wild CP Complementing the genome with an “exposome”: the outstanding challenge of environmental exposure measurement in molecular epidemiology.Cancer Epidemiol Biomarkers Prev. 2005; 14: 1847-1850Crossref PubMed Scopus (976) Google Scholar Such understanding might also connect societal needs to live greener, heathier, and longer in the One Health model, which considers the interconnection of people, animals, plants, and their shared environment.11Centers for Disease Control and PreventionOne Health Model.https://www.cdc.gov/onehealth/basics/index.htmlDate: 2018Date accessed: March 16, 2021Google Scholar Our genes are thought to determine around 30% of health outcomes, and there has been considerable investment in genomics and epigenetics, directed mostly at personalised medicine but increasingly seeking predictive, preventive opportunities, as reflected in Genome UK: The Future of Healthcare.12Department of Health and Social CareDepartment for BusinessEnergy & Industrial StrategyOffice for Life SciencesLord Bethell of RomfordGenome UK: the future of healthcare.https://www.gov.uk/government/publications/genome-uk-the-future-of-healthcareDate: 2020Date accessed: March 16, 2021Google Scholar In March, 2021, The Lords' Science and Technology Select Committee recommended that data-driven technologies should be harnessed to identify useful biomarkers of ageing for personalised interventions to enhance healthier, more independent living.13Science and Technology Select CommitteeAgeing: science, technology and healthy living.https://publications.parliament.uk/pa/ld5801/ldselect/ldsctech/183/183.pdfDate accessed: March 16, 2021Google Scholar Augmented by AI, scientists are seeking and identifying biomarkers to track the ageing process and manage age-related chronic diseases. Looking upstream from medical interventions, this work considers structural public health, social, and economic changes alongside individual lifestyle factors, and must now reflect pandemic resilience too.14Zhavoronkov A Bischof E Lee K Artificial intelligence in longevity medicine.Nature Aging. 2021; 1: 5-7Crossref Google Scholar The Open Life Data Framework will focus on innovative data uses in personal and population health management, including pandemic resilience AI. Due to be publish in September 2021, it will offer recommendations on new ethical, social, and business models to embed data-driven momentum toward healthy longevity for all, as health systems and other stakeholders—such as the business community—adapt in the wake of COVID-19. The framework will explore how to release innovation at scale across the data value chain. The efficiencies needed to achieve this scale might involve combining data processing across purposes, such as commissioning, care quality management, public health intelligence, and research.15Ainsworth J Buchan I Combining health data uses to ignite health system learning.Methods Inf Med. 2015; 54: 479-487Crossref PubMed Scopus (34) Google Scholar The framework will address the under-representation of key groups (eg, socioeconomically disadvantaged and minority ethnic groups) in many health research datasets. There are also opportunities to leverage the most valuable datasets that can be used multiple times and in multiple places, or get combined with data in multiple ways, like curated reference datasets. For example, both non-health data and health-care data could be harnessed to identify risks and interventions for chronic diseases, including dementia through ageing biomarkers and digital fingerprints using multimodal AI. The Open Life Data Framework will complement the Government's Health and Care Data Strategy and the Goldacre review,16Department of Health and Social CareNew review into use of health data for research and analysis.https://www.gov.uk/government/news/new-review-into-use-of-health-data-for-research-and-analysisDate: 2021Date accessed: March 16, 2021Google Scholar expected to be published by the end of May 2021. These initiatives open new paths to HLE+5, and the framework will consider how data can be used in pursuit of that goal and the programmes needed to achieve it. The UK's COVID-19 digital pivots have provided opportunities for a wider data ecosystem. For example, open Application Programming Interfaces on NHS applications will enable improved sharing of both health-care and non-health data and will facilitate regional, integrated intelligence systems across the NHS and local authority data sources.17NHS Cheshire and MerseysideCombined Intelligence for Population Health Action (CIPHA).www.cipha.nhs.ukDate: 2021Date accessed: March 16, 2021Google Scholar Edge computing and 5G technologies will extend this reach. The Office for National Statistics is also considering wider data sources for its Health Index.18Office for National StatisticsHealth Index.https://healthindex.lcp.uk.com/Date: 2020Date accessed: March 16, 2021Google Scholar Incentives for international collaboration are signalled for in the Government paper: Build Back Better Plan for Growth.19HM TreasuryBuild back better plan for growth.https://www.gov.uk/government/publications/build-back-better-our-plan-for-growthDate: 2021Date accessed: March 16, 2021Google Scholar This could amplify global initiatives underway, such as the Early Detection of Neurodegenerative diseases programme of Alzheimer's Research UK and Gates' Foundation,20Alzheimers Research UKAlzheimer's Research UK partners with global leaders including Bill Gates to revolutionise detection of neurodegenerative diseases.https://www.alzheimersresearchuk.org/alzheimers-research-uk-partners-with-global-leaders-including-bill-gates-to-revolutionise-detection-of-neurodegenerative-diseases/Date: 2020Date accessed: March 16, 2021Google Scholar with an open repository of biomarkers and digital phenotypes. Incentivising equality in healthy longevity will require a population rather than a disease focus and international collaboration with multiple stakeholders and grid of data-intensive health systems. Substantial progress towards healthy longevity for all will need a change of health data focus from clinics to citizens, communities and businesses, and building a more detailed picture of our health journeys. This change will involve more focus on the early parts of those journeys, not restricted to a sickness view, and fuller use of non-health data. The Open Life Data Framework will lay out the life data, and the governance, incentives, and strategies to initiate and sustain this progress for all.