Consolidating the UK Longitudinal Linkage Collaboration for the longitudinal research community.

英国纵向链接合作(UK LLC)是一个研究资源，提供了一个“可信的研究环境”(TRE)，可以对纵向研究数据进行安全、可靠和隐私保护的分析。英国有限责任公司包含了20多万名志愿者生活的方方面面的数据，这些志愿者参与了20多项纵向人口研究。这些研究衡量了志愿者的社会和经济状况、健康、发展和幸福感，以及随着时间的推移这些方面的变化。通过将这些数据与他们的NHS记录结合在一起，英国有限责任公司正在促进符合英国所有社区需求的研究，通过更好地了解健康的决定因素来改善生活，并为公共卫生政策和服务的改进提供信息。目的：我们希望通过英国有限责任公司，比这种工作方式建立之前更多地了解我们如何改善人们的生活。我们现在开始运行：托管研究志愿者提供的研究数据，这些数据与他们的NHS数据和我们生活的环境数据有关。LHW内部获得批准的研究人员已经开始分析。我们寻求资金来扩大这一创新资源的范围，使其成为支持研究、帮助研究人员回答重要研究问题并帮助改善英国人民生活的长期解决方案。我们希望通过增加收入、就业、福利和教育记录来增强资源。通过单一应用程序获得各种关联数据，将使研究人员能够更好地调查健康、社会和环境之间的相互作用，解决政府研究的优先事项，并更有效地响应英国不断出现的经济、社会和健康需求。目标：我们必须进一步发展英国有限责任公司，并将我们的核心功能打造为高质量的“研究就绪”科学资源。我们将通过我们熟练的数据管理、运营管理和治理团队以及专家执行和治理结构来交付我们的建议。我们将：-将英国有限责任公司扩大到新冠肺炎研究之外，使所有人都受益；与研究和公众合作，确保安全和透明地完成这项工作-通过将就业、福利和教育记录联系起来，最大限度地利用可用的关联数据-为经批准的研究人员制定支持性指南和文档-创建由英国有限责任公司工作人员和研究人员使用TRE开发的工具(例如，软件代码)和方法的库，以允许未来的用户检查和重复使用它们-使用具有公共投入并符合公平数据原则(使数据可查找、可访问、-支持研究和研究社区有效合作。我们还建议扩大我们的公众参与模式，试行一个新的“公民小组”，这是一个通过理解患者数据而形成的概念。这项试点将在数据界和更广泛的公众之间建立对话，以确保良好的治理和加强相互学习。这些增强将是我们通过NCS计划提供资金的核心职能之外的补充。好处：研究由不同的数据促进，因为我们的社会以及健康和福祉问题也是不同的。将这些数据汇集在一起将有助于我们更多地了解四个国家的健康、社会和环境不平等以及地区差异和机会。通过增加我们与之互动的公共贡献者的数量，我们将为更广泛的努力提供信息，以这种使用数据的方式建立信心，这将证明对公众和更广泛的研究社区有利。

The UK Longitudinal Linkage Collaboration (UK LLC) is a research resource providing a 'Trusted Research Environment' (TRE) that enables safe, secure and privacy-protecting analyses of longitudinal research data. UK LLC contains data on many aspects of the lives of more than 200,000 volunteer participants in 20+ Longitudinal Population Studies (LPS). These are studies measuring volunteers' social and economic circumstances, health, development and wellbeing, and changes in these, over time. By bringing this data together with their NHS records, the UK LLC is facilitating research that meets the needs of all our communities across the UK, improving lives by better understanding determinants of health, and informing improvements to public health policy and services.Purpose: Through the UK LLC we hope to find out more about how we can improve people's lives than was possible before this way of working was set up. We are now up and running: hosting study data provided by research volunteers linked with their NHS data and data about the environment we live in. Approved researchers within the LHW have started their analyses.We seek funding to extend the scope of this innovative resource, making it a long-term solution that supports studies and helps researchers answer important research questions and help improve the lives of people across the UK. We want to enhance the resource by adding earnings, employment, benefit and education records. Availability of a wide variety of linked data available through a single application will enable researchers to conduct better investigations of interactions between health, society and the environment, address government research priorities and more efficiently respond to the UK's emerging economic, social and health needs.Objectives: It is essential that we further develop the UK LLC and build on our core function as a high-quality 'research-ready' scientific resource. We will deliver our proposal through our skilled data management, operational management and governance teams with expert executive and governance structures in place. We will:- Expand the UK LLC beyond COVID-19 research to benefit all; working with studies and the public to ensure this is done safely and transparently- Maximise available linked data by linking employment, benefits and education records- Develop supporting guides and documentation for approved researchers- Create a library of the tools (eg, software code) and methods developed by UK LLC staff and researchers using the TRE, to allow future users to check and re-use them- Widen visibility and access to data using the 'five safes' application approach with public input and in line with FAIR data principles (making data Findable, Accessible, Interoperable and Reusable).- Support studies and the research community to work effectively together.We also propose expansion of our public involvement model by piloting a novel 'Citizen Panel', a concept developed by Understanding Patient Data. This pilot will establish a dialogue between the data community and wider public that ensures good governance and enhances mutual learning.These enhancements will be in addition to our core function, funded through the NCS programme.Benefits: Research is facilitated by diverse data because our society, and health and wellbeing issues, are also diverse. Bringing this data together will help us understand more about health, social and environmental inequalities and regional differences and opportunities across the four nations.By increasing the number of public contributors we interact with we will inform wider efforts to build confidence in this way of working with data that will prove beneficial to the public and wider research community.