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

为 SPF 英国人口实验室第一波纵向管理数据脊柱范围界定项目拨款

• 批准号: ES/S016732/1
• 负责人: Andy Boyd
• 金额: $ 30.19万
• 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: 2018
• 资助国家: 英国
• 起止时间: 2018 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FS016732%2F1
• 关键词: LONGITUDINAL; ADMINISTRATIVE; DATA; SPINE; SCOPING

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.

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。英国在进行纵向人口研究方面有着悠久的历史，根据一系列特征(例如，他们都出生在同一周)，邀请公众参与研究。然后，研究人员对这些人的健康和福祉进行一段时间的跟踪，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制度，以促进公共利益。新的数据科学机会和日益数字化的常规收集的健康和社会数据意味着有新的机会来改进这类研究，并有新的机会来改善公共利益。这个项目将收集证据来支持ESRC和英国健康数据研究(HDRUK)评估纵向管理数据脊柱(ADS)的可行性和潜在价值。ADS可以概括为一个登记簿，其中包含英国人口中每一名成员的记录，他们的联系方式，并已通过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、社会和经济状况)进行了增强。这些广告可以作为一种研究工具：1)选择并邀请公众参与新的纵向研究。在这样做的时候，重要的是被邀请者要代表更广泛的人群，这样才能研究每个人的情况，每个人--包括弱势或弱势群体--都能从纵向研究带来的改进中受益；2)了解现有研究是否代表了更广泛的人群，以便政策制定者能够理解在设计政策时如何解释研究结果；以及了解招募研究人员的方式是否会导致停止参与研究的人，或者数据质量问题是否在研究结果中引入了错误或偏见，并告知可用于控制偏见或代表性受损的统计方法；3)链接到研究参与者经常生成的记录(例如，他们的健康、教育、福利、就业、犯罪行为记录)，以便为可能更准确或非常技术性的研究收集新数据；4)了解操作和科学机会，并控制在英国纵向研究中人们参与不止一项研究的科学挑战(200万至300万英国公民参与纵向研究)。5)ADS还可用于运行“人口数据实验室”研究设计，其中纵向研究用于基于地方、地区或国家人民记录数据库的研究。这种类型的研究带来了纵向记录(详细数据和人们直接随时间提供的生物样本)的好处以及常规记录(记录一段时间内关于健康事件或政府服务使用情况的记录)的好处；广告将需要从不同的来源构建，包括政府部门、国家统计局和国民健康保险制度持有的来源。预计其中一些信息将在联合王国一级保存；一些将在行政级别下放；另一些将在地方/城市/区域一级保存。这些项目，以及同时进行的其他项目，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，应该如何建设，以及需要采取什么措施，使其能够在数据所有者和公众的支持下运行。

项目成果

Participant acceptability of 'digital footprint' data collection strategies: evidence from the ALSPAC birth cohort study.

参与者对“数字足迹”数据收集策略的接受度：来自 ALSPAC 出生队列研究的证据。

• 发表时间: 2019
• 作者: Boyd A

The Bristol Self Harm Register (BSHR) dataset: Linked self-harm register records of the children in the Avon Longitudinal Study of Parents and Children (ALSPAC)

布里斯托尔自我伤害登记册 (BSHR) 数据集：雅芳家长和儿童纵向研究 (ALSPAC) 中儿童的链接自残登记记录

• DOI: 10.12688/wellcomeopenres.17724.2
• 发表时间: 2023
• 期刊: Wellcome Open Research
• 作者: Mummé M

Health and Care Intelligence: A Blueprint for Data Access

健康与护理智能：数据访问蓝图

• 发表时间: 2019
• 作者: Tuckett A

Understanding Population Data for Inclusive Longitudinal Research

了解人口数据以进行包容性纵向研究

• 发表时间: 2022
• 作者: Boyd A

Participant acceptability of 'digital footprint' data collection strategies: evidence from the index participants of the ALSPAC birth cohort study.

参与者对“数字足迹”数据收集策略的可接受性：来自 ASPAC 出生队列研究指数参与者的证据。

• 发表时间: 2021
• 作者: Boyd A