UK Longitudinal Linkage Collaboration: the transformative Trusted Research Environment for the UK longitudinal research community

英国纵向联系协作：英国纵向研究界的变革性可信研究环境

• 批准号: MR/X021556/1
• 负责人: Andy Boyd
• 金额: $ 844.93万
• 依托单位: University of Bristol
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2023
• 资助国家: 英国
• 起止时间: 2023 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=MR%2FX021556%2F1
• 关键词: UK; Longitudinal; Linkage; Collaboration; transformative

The UK Longitudinal Linkage Collaboration (UK LLC) has been set up to bring together data from longitudinal study participants with their routine records. This is done in a secure way to help researchers work to improve health and wellbeing throughout and beyond the COVID-19 pandemic. What does this mean and why is it important? Longitudinal studies gather data about people's lives over time. This data can lead to discoveries that improve people's lives. Linking study data with health and administrative records will help researchers deliver public benefit research. Continued funding of UK LLC will allow us to use what we learned from the pandemic and offer the resource as a long-term service for UK longitudinal research. It will make possible research into our biggest health/socio-economic challenges and widening health inequalities. The large scale, diverse linked data will provide the numbers for researchers to study rarer outcomes and harder-to-reach populations. How does UK LLC work and how is it unique? UK LLC will support a national move to standardise and regulate data access for all Longitudinal Population Studies (LPS). We are a national Trusted Research Environment (TRE) for longitudinal research. A TRE is a secure computer system that allows researchers to analyse data from within the environment. Our TRE holds data from 280,000 study participants from across the UK. The data itself is held within the TRE - it never leaves, and it's never sold on. Data is linked to regularly refreshed NHS and environmental records (eg, air pollution, noise pollution). We have secured approvals to link to employment, earnings, benefits and education records from the UK Government organisations who own this data. We are working with studies to make sure participants are aware of this use of their data and can discuss any concerns with their study team. We know that some studies may choose not to permit all linkage options. This new resource has been made possible by providing an easy and consistent way for studies to join and by centralising our operations. Our processes were built from the ground up with particular focus on safeguards and security. Who is involved in UK LLC? Our partnership includes UK LLC, lead researchers from 24 studies and many other key individuals and organisations working with health data. We will support parts of the UKRI Population Research UK (PRUK) vision to centralise support for studies. This will unlock new scientific opportunities. We have public contributors, including study participants, who form an important part of our existing and planned activities. They focus on representing the views of publics and study participants, working to make sure the way we talk and promote the resource is transparent, clear and demonstrates the public benefit. What will this funding allow UK LLC to do? It will allow us to continue to offer this valuable national resource for research and to make it better. It will enable UK-wide analyses, allowing research results and effects on policies to be measured and compared. We will quickly be able to bring on new and existing study data. As researchers use the resource, it will create an ever-increasing knowledge base to build and improve on. Importantly, we will be able to learn from the coronavirus pandemic and use the TRE to support a quick response to future crises and NHS/UK Government needs. Continued funding will deliver our three core objectives to a) make UK LLC a globally unique resource in the breadth and depth of its capability, b) provide a route for studies to move to working with their data in TREs and c) empower researchers to get the best out of the available data and continue to build and grow its capacity and improve its quality as a high value research resource for the UK. By bringing this data together, we're providing a way for research to meet the needs of people across all our communities.

英国纵向联系协作组织（UK LLC）的成立是为了将纵向研究参与者的数据与他们的常规记录结合起来。这是以安全的方式完成的，以帮助研究人员在COVID-19大流行期间和之后努力改善健康和福祉。这意味着什么，为什么它很重要？纵向研究收集了人们长期生活的数据。这些数据可以带来改善人们生活的发现。将研究数据与健康和行政记录联系起来将有助于研究人员进行公共利益研究。英国有限责任公司的持续资助将使我们能够利用我们从大流行中学到的知识，并将资源作为英国纵向研究的长期服务。它将使研究我们最大的健康/社会经济挑战和扩大健康不平等成为可能。大规模、多样化的关联数据将为研究人员研究更罕见的结果和更难接触的人群提供数据。英国LLC是如何运作的，它有什么独特之处？ 英国有限责任公司将支持一项国家行动，以审查和规范所有纵向人口研究（LPS）的数据访问。我们是一个国家值得信赖的研究环境（TRE）的纵向研究。TRE是一个安全的计算机系统，允许研究人员从环境中分析数据。我们的TRE拥有来自英国各地的280，000名研究参与者的数据。数据本身保存在TRE中-它永远不会离开，也永远不会出售。数据与定期更新的NHS和环境记录（例如，空气污染，噪音污染）相关联。我们已获得批准，将拥有这些数据的英国政府组织的就业，收入，福利和教育记录联系起来。我们正在与研究合作，以确保参与者意识到他们的数据的这种使用，并可以与他们的研究团队讨论任何问题。我们知道，有些研究可能选择不允许所有联系选项。这种新的资源已经成为可能，通过提供一个简单和一致的方式加入研究和集中我们的业务。我们的程序是从头开始建立的，特别注重保障和安全。 谁参与了UK LLC？我们的合作伙伴包括英国有限责任公司，来自24项研究的主要研究人员以及许多其他从事健康数据工作的重要个人和组织。我们将支持UKRI人口研究英国（PRUK）愿景的部分内容，以集中支持研究。这将带来新的科学机遇。我们有公众贡献者，包括研究参与者，他们是我们现有和计划中活动的重要组成部分。他们专注于代表公众和研究参与者的观点，努力确保我们谈论和推广资源的方式是透明的，清晰的，并展示了公共利益。这笔资金将允许英国LLC做什么？它将使我们能够继续提供这一宝贵的国家研究资源，并使之更好。它将使全联合王国的分析成为可能，使研究结果和对政策的影响得以衡量和比较。我们将很快能够带来新的和现有的研究数据。随着研究人员使用该资源，它将创建一个不断增长的知识库，以建立和改进。重要的是，我们将能够从冠状病毒大流行中学习，并使用TRE来支持对未来危机和NHS/英国政府需求的快速反应。持续的资金将实现我们的三个核心目标，a）使英国有限责任公司在其能力的广度和深度方面成为全球唯一的资源，B）为研究提供一条路线，以在TREs中使用他们的数据，c）使研究人员能够充分利用现有数据，继续建立和发展其能力，并提高其质量作为英国的高价值研究资源。通过将这些数据汇集在一起，我们提供了一种研究方法，以满足我们所有社区人们的需求。

项目成果

Associations between self-reported healthcare disruption due to covid-19 and avoidable hospital admission: evidence from seven linked longitudinal studies for England.

• DOI: 10.1136/bmj-2023-075133
• 发表时间: 2023-07-19
• 期刊: BMJ-BRITISH MEDICAL JOURNAL
• 影响因子: 105.7
• 作者: Green, Mark A.;McKee, Martin;Hamilton, Olivia K. L.;Shaw, Richard J.;Macleod, John;Boyd, Andy;Katikireddi, Srinivasa Vittal
• 通讯作者: Katikireddi, Srinivasa Vittal

Associations between SARS-CoV-2 infection and subsequent economic inactivity and employment status: pooled analyses of five linked longitudinal surveys.

SARS-CoV-2 感染与随后的经济不活动和就业状况之间的关联：五项相关纵向调查的汇总分析。

• DOI: 10.1101/2023.07.31.23293422
• 发表时间: 2023
• 期刊: medRxiv : the preprint server for health sciences
• 作者: Shaw,RichardJ;Rhead,Rebecca;Silverwood,RichardJ;Wels,Jacques;Zhu,Jingmin;Hamilton,OliviaKl;Gessa,GiorgioDi;Bowyer,RuthCe;Moltrecht,Bettina;Green,MichaelJ;Demou,Evangelia;Pattaro,Serena;Zaninotto,Paola;Boyd,Andy;Greaves,F
• 通讯作者: Greaves,F

The long COVID evidence gap: comparing self-reporting and clinical coding of long COVID using longitudinal study data linked to healthcare records

长期新冠病毒证据缺口：使用与医疗记录相关的纵向研究数据来比较长期新冠病毒的自我报告和临床编码

• DOI: 10.1101/2023.02.10.23285717
• 发表时间: 2023
• 作者: Knuppel A