LONGITUDINAL ADMINISTRATIVE DATA SPINE SCOPING PROJECT GRANT FOR THE SPF UK POPULATION LAB WAVE I

该项目将收集证据，为纵向研究数据资源的开发提供信息，并回应2017年英国经济和社会研究理事会（ESRC）纵向研究审查的核心建议。英国有着长期的纵向人口研究历史，邀请公众参与基于一系列特征的研究（例如，他们都在同一周出生）。研究人员随后跟踪这些人的健康和福祉，目的是了解为什么人们的健康，发展和生活结果不同，以及我们如何改善健康和社会系统以促进公共利益。新的数据科学机会和日常收集的健康和社会数据的日益数字化意味着有新的机会来改善这种类型的研究和改善公共利益的新机会。该项目将收集证据，以支持ESRC和英国健康数据研究（HDRUK）评估纵向行政数据脊柱（ADS）的可行性和潜在价值。ADS可以概括为一个登记册，其中载有联合王国人口中每一个成员的记录及其联系方式，并增加了关键的健康和社会信息（如健康状况、年龄、性别、家庭和邻里特征、社会和经济地位）。该ADS可以作为一种研究工具：1）选择和邀请公众参与新的纵向研究。在这样做时，重要的是，被邀请的人要代表更广泛的人口，这样每个人的情况都可以得到研究，每个人-包括脆弱者或处境不利者-都可以从纵向研究可能带来的改进中受益; 2）了解现有的研究是否代表更广泛的人口，这样决策者就可以了解在制定政策时如何解释研究结果;并了解研究招募方式、停止参与研究的人员或数据质量问题是否已将错误或偏倚引入研究结果，并告知可用于控制偏倚或代表性受损的统计方法; 3）链接到研究参与者常规生成的记录（例如他们的健康、教育、福利、就业、犯罪记录），以便收集新的数据，用于可能更准确或技术性很强的研究; 4）了解操作和科学机会，并控制英国纵向研究人员参与多项研究的科学挑战（200万到300万英国公民参加了纵向研究）。5）ADS也可以用于运行“人口数据实验室”的研究设计，纵向研究是基于当地、地区或国家的人口记录数据库进行的研究。这种类型的研究带来了纵向记录的好处（详细的数据和生物样本直接提供的人随着时间的推移）加上常规记录的好处（记录，捕捉信息的健康事件或使用政府服务随着时间的推移）; ADS将需要构建从不同的来源，包括那些由政府部门，国家统计局和NHS。预计其中一些信息将在联合王国一级保存;一些在下放的行政一级保存;其他的在地方/城市/区域一级保存。该项目以及同时开展的其他项目旨在收集学术研究人员、卫生专业人员、政府官员以及重要的公众的意见和经验，了解这种研究资源可以做什么，应该如何构建，以及需要采取哪些措施，使其能够在数据所有者和公众的支持下运作。

This project will gather evidence to inform the development of longitudinal research data resources and to respond to core recommendations from the 2017 UK Economic and Social Research Council's (ESRC) Longitudinal Studies Review. The UK has a long history of running longitudinal population studies, where members of the public are invited to take part in research based on a set of characteristics (e.g. they were all born in the same week). Researchers then follow-up on these people's health and wellbeing over time with the aim of understanding why people's health, development and life outcomes differ, and how we can improve health and social systems to further the public good. New data science opportunities and increasing digitisation of routinely collected health and social data mean there are new opportunities to improve this type of research and new opportunities to improve the public good.This project will gather evidence to support ESRC and Health Data Research UK (HDRUK) in assessing the feasibility and potential value of a longitudinal Administrative Data Spine (ADS). An ADS can be summarised as a register containing a record of every member of the UK population, their contact details and which has been enhanced with key health and social information (such as health status, age, sex, household and neighbourhood characteristics, social and economic status). This ADS could be a research tool to:1) select and invite members of the public into new longitudinal research studies. When doing this it is important that those invited are representative of the wider population so everyones circumstances can be studied and everyone - including the vulnerable or disadvantaged - can benefit from the improvements that longitudinal research can bring; 2) understand if existing studies represent the wider population so that policy makers can understand how to interpret study findings when designing policies; and to understand if the way in which recruitment to the study, people stopping taking part in the study, or if data quality issues have introduced error or bias into study findings and to inform statistical methods that can be used to control for bias or impaired representation; 3) link to study participants routinely generated records (e.g. their health, education, benefits, employment, criminality records) in order to collect new data for research which may be more accurate, or very technical; 4) understand the operational and scientific opportunities and to control the scientific challenges where people in UK longitudinal research take part in more than one study (2 to 3 million UK citizens are take part in longitudinal studies).5) the ADS could also be useful to run 'population data laboratory' research designs, where longitudinal studies are used in research based on local, regional or national databases of people's records. This type of research brings the benefits of longitudinal records (detailed data and biosamples provided by people directly over time) coupled with the benefits of routine records (records which capture information on health events or the use of government services over time);An ADS would need to be constructed from diverse sources, including those held by government departments, the Office for National Statistics and the NHS. It is anticipated that some of this information will be held at a UK level; some at a devolved administration level; and others at a local/city/regional level. This projects, and other projects running at the same time, aim to gather the views and experience of academic researchers, health professionals, government officials and importantly the public on what such a research resource could do, how it should be constructed and what measures would need to be put in place to allow it to operate with the support of data owners and the public.