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Linking pre- and post-adoption records for research in anonymised form in a data safe haven:

机译：在数据安全避风港中链接以匿名形式的研究预先和采用后的记录：

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Introduction: The long-term health and wellbeing of adoptees is under-researched. One reason for this has been limited data accessibility regarding the adoption process, and another is a practice common in some UK jurisdictions of changing the NHS number (or equivalent) at adoption, as part of creating the new identity. The SAIL Databank holds data from the Wales Children and Family Court Advisory and Support Service (Cafcass Cymru), together with children’s social care data, and can link these with routine health and administrative data in anonymised form. However, because the linkage key at SAIL is based on an encryption of the NHS number, working with pre- and post-adoption records for longitudinal research remains a major challenge. We set out to explore the legal implications of, and social support for, linking these records for use in anonymised form for longitudinal research.Methods: We reviewed the main legislation and regulations governing the use of data about adoptees in England and Wales. We gauged support for a social licence in Wales by carrying out interviews with individuals who had been involved in the adoptions process, and by engaging with general public groups for their views. We drew out the main emerging themes and, in combination with the review, propose a way forward.Results: The legal review indicated that there are provisions in the Family Procedure Rules (England and Wales) and the General Data Protection Regulation that can be relied upon for the lawful processing of adoption data into anonymised form for research. The main points of concern about linking pre- and post-adoption records were privacy, data security, the need to limit the number of organisations involved in data sharing, and re-identification risk. The over-riding message was favourable with longitudinal research seen as strongly beneficial.Conclusion: This study has indicated that in Wales, there is no legal impediment, nor major objection from individuals involved in the adoptions process, as well as the general public for the use of adoption data in anonymised form, in a data safe haven. This includes the linkage of pre- and post‑adoption records to enable novel longitudinal research to take place. The provisos were that robust safeguards must be in place, and that the research should aim to benefit adoptees and to improve policy and practice. We conclude that it is reasonable to proceed with caution to develop practical ways to link pre- and post‑adoption records in a data safe haven.
机译：介绍：受到研究的长期健康和福祉。对于采用过程的数据可访问性有限，另一个原因是一些英国司法管辖区在采用时期的NHS号码（或同等学历）的一些司法管辖区的实践，作为创造新的身份的一部分。 Sail Databank持有来自威尔士儿童和家庭法院咨询和支持服务（Cafcass Cymru）的数据，以及儿童的社会护理数据，并可以以匿名形式与日常健康和行政数据联系起来。然而，由于Sail的联动密钥基于NHS号码的加密，所以与纵向研究的预先和采用后记录一起工作仍然是一个重大挑战。我们列出了探索与匿名研究中的这些记录相关的合法影响和社会支持，以便在纵向研究中使用匿名形式。方法：我们审查了有关英格兰和威尔士的采用数据使用的主要立法和条例。我们通过对参与采用进程的个人进行访谈，并通过与普通公共团体参与观众，通过采访对威尔士的社会许可支持。我们制定了主要的新兴主题，并与审查相结合，提出了一种前进的方向。结果：法律审查表明，家庭诉讼规则（英格兰和威尔士）和一般数据保护法规有规定，可以依赖于将采用数据的合法处理到匿名的研究表格中。关注与采用后和采用后记录的关注点是隐私，数据安全性，需要限制涉及数据共享的组织数量，并重新识别风险。过度骑行的信息有利于纵向研究，视为强烈有益。结论：本研究表明，在威尔士，在数据安全避风港，没有法律障碍，也没有来自参与通过的个人的个人反对，也没有通过匿名形式使用采用数据。这包括前后记录的联系，以实现新的纵向研究。该遗嘱必须稳健的保障必须到位，并且该研究应旨在使采用者受益并改善政策和实践。我们得出结论，谨慎行事是合理的，以制定在数据安全避风港中链接采用前和采用后记录的实际方法。

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