Linking health and education data for research to improve outcomes for children in England - Supplement

ECHILD（Education and Child Health Insights from Linked Data）是一个研究数据库，将英格兰所有儿童的现有健康，教育和社会护理信息结合在一起。这些关联数据帮助我们更好地了解教育如何影响儿童健康，以及健康如何影响儿童教育。儿童发展倡议被统计管理办公室认为是一个良好做法的例子，通过将数据联系起来，更全面地了解儿童和青年的生活，提高了他们的可见度。这些数据已被用于衡量大流行期间不同儿童群体的医院服务中断情况，其依据是健康或社会护理需求，评估教育成果不佳的风险以及根据出生时的胎龄为7岁和11岁儿童提供特殊教育需求的必要性。社区NHS Digital获得了资助，以帮助找到一个治理解决方案，以便在UCL研究团队之外继续共享ECHILD。ECHILD任务和完成小组（包括NHS Digital，DfE，DHSC，ONS和UCL的成员）之间的共识是，在短期内开放数据用于更广泛的研究用途的唯一可行途径是UCL再许可他们现有的ECHILD数据。 该提案的目的是通过UCL和NHS Digital之间的分许可协议，开放ECHILD用于更广泛的研究用途。这将使更广泛的研究界和政府分析人员能够通过ONS SRS使用数据，在任何对健康或教育有重大益处的领域进行研究。通过分许可协议实现更广泛的使用还将使UCL与ONS SRS和数据托管人合作，对数据流，准备，更新和提取程序的端到端服务进行道路测试。目的：1.获得伦理委员会和数据所有者的批准，使ECHILD成为一个研究数据库，可以开放供更广泛的研究使用。2.创建一个扩展的ECHILD网站，以提高透明度，并提供适当的隐私声明，批准的研究申请登记册和对成果的访问。3.维护ECHILD用户指南，并为潜在申请人提供支持，包括就开展进一步联系（例如与罕见疾病队列或更广泛的健康/教育数据）提供建议。支持申请人使用数据，例如通过公开代码。5.建立审查和批准（作为许可证持有者）提交给联合王国统计局研究认证小组的项目提案的程序。与国家统计局合作，管理数据持有者和国家统计局SRS之间的数据传输和数据更新;检查新的链接（和重新链接），并将数据组织成更广泛的研究小组可用的形式。管理扩展ECHILD的附加数据集（例如，孕产妇服务数据、社区服务数据和心理健康数据）的批准。8.对儿童发展倡议进行战略发展，以便在获得新资源/治理允许的情况下进一步加强。

ECHILD (Education and Child Health Insights from Linked Data) is a research database that joins together existing health, education and social care information for all children in England. This linked data is helping us to better understand how education affects children's health, and how health affects children's education. ECHILD has been recognised by the Office for Statistics Regulation as an example of good practice in increasing the visibility of children and young people by linking data to create a more rounded picture of their lives. The data has already been used to measure disruption to hospital services during the pandemic for different groups of children, based on health or social care needs, and to evaluate the risk of poor educational outcomes and the need for Special Educational Needs provisions at ages 7 and 11 depending on gestational age at birth.The aim of the ECHILD partnership was and is to make the ECHILD database available to the wider research community. NHS Digital were funded to help find a governance solution to enable onward sharing of ECHILD beyond the UCL study team. Consensus amongst the ECHILD Task & Finish Group (including membership from NHS Digital, DfE, DHSC, ONS and UCL) is that the only viable route to opening up the data for wider research use in the short-term is for UCL to sublicense their existing ECHILD data. Proposed Research The aim of this proposal is to open up ECHILD for wider research use through a sublicensing agreement between UCL and NHS Digital. This will allow the wider research community and government analysts to use the data via the ONS SRS to undertake research in any area that provides significant benefits to health or education. Implementation of wider use via a sublicensing agreement will also enable road-testing of an end-to-end service of data flows, preparation, updating and extraction procedures, by UCL working in partnership with ONS SRS and the data custodians. Objectives: 1. Obtain approval from ethics committees and data owners for ECHILD to become a Research Database that can be opened up for wider research use. 2. Create an expanded ECHILD website to promote transparency, with appropriate privacy notices, a register of approved research applications, and access to outputs. 3. Maintain the ECHILD User Guide and provide support to prospective applicants, including advice on carrying out further linkages (e.g. to rare disease cohorts, or wider health/education data)4. Support applicants to use the data, e.g. by making code publicly available. 5. Establish processes for reviewing and approving (as license holders) project proposals submitted to the UK Statistics Authority Research Accreditation Panel.6. Work with ONS to manage data transfers between data holders and ONS SRS and refreshes of data; check new linkages (and re-linkages) and organise data into a form that is useable by a wider research group.7. Manage approvals for additional datasets for extended ECHILD (e.g. Maternity Services Data, Community Services Data, and Mental Health data). 8. Strategic development of ECHILD to allow for future enhancement as new resources become available / as governance allows.