ISCF HDRUK DIH Sprint Exemplar: A scalable federated solution for UK health data encryption, linking and discovery

ISCF HDRUK DIH Sprint Exemplar：用于英国健康数据加密、链接和发现的可扩展联合解决方案

• 批准号: MC_PC_18031
• 负责人: Anthony Brookes
• 金额: $ 34.23万
• 依托单位: University of Leicester
• 依托单位国家: 英国
• 项目类别: Intramural
• 财政年份: 2019
• 资助国家: 英国
• 起止时间: 2019 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=MC_PC_18031
• 关键词: ISCF; HDRUK; DIH; Sprint; Exemplar

For healthcare and research purposes diverse patient datasets need to be linked and made easy to find. This requires a unified national approach, designed to protect patient privacy and yet operate in a combined centralised and multi-party (federated) manner. NHS digital is working with SME Privitar to encrypt and link centralised datasets gathered nationally and regionally (e.g., via LHCREs). To complement this, compatible methods need to also be applied to federated resources – both regional and themed. Resulting sets of linkable data on individual patients then need to be made easy to co-discover in technically and ethically secure ways, as a prelude to access and analysis. We propose a Midlands project to demonstrate such a solution – involving data owners, Privitar and other companies as system providers, along with HDRUK, TDCC, governance and other experts. We will establish a network of linkable and co-discoverable patientrelated datasets, anchored on a substantial set of ‘LLR’ GP records (Leicester, Leicestershire, Rutland). The network will also span other regional primary care data, secondary care records, and biobank/cohort data. A case study in multimorbidity will inform and test the system's detailed design, and a multi-disciplinary oversight committee will ensure scalability and national relevance.

出于医疗保健和研究的目的，需要将不同的患者数据集链接起来，并使其易于查找。这需要一个统一的国家方法，旨在保护患者隐私，但仍以集中式和多方(联邦)相结合的方式运作。NHS Digital正在与SME Privitar合作，对国家和地区收集的集中数据集进行加密和链接(例如，通过LHCRE)。为了补充这一点，兼容的方法还需要应用于联合资源--无论是区域资源还是主题资源。然后，作为访问和分析的前奏，需要以技术和伦理安全的方式轻松地共同发现关于个别患者的可链接数据集。我们提出了一个米德兰兹项目来展示这样的解决方案--让数据所有者、Privitar和其他公司作为系统提供商，以及HDRUK、TDCC、治理和其他专家。我们将建立一个可链接和可共同发现的患者相关数据集的网络，以大量的LLR全科医生记录(莱斯特、莱斯特郡、拉特兰)为基础。该网络还将涵盖其他区域初级保健数据、二级保健记录和生物库/队列数据。多发病案例研究将为该系统的详细设计提供信息并对其进行测试，一个多学科监督委员会将确保可伸缩性和国家相关性。

项目成果

Clustering Long-Term Health Conditions Among 67728 People with Multimorbidity Using Electronic Health Records in Scotland

使用苏格兰电子健康记录对 67728 名多重疾病患者的长期健康状况进行聚类

• DOI: 10.2139/ssrn.4307695
• 发表时间: 2022
• 期刊: SSRN Electronic Journal
• 作者: Fagbamigbe A

Beacon v2 and Beacon networks: A "lingua franca" for federated data discovery in biomedical genomics, and beyond.

• DOI: 10.1002/humu.24369
• 发表时间: 2022-06
• 期刊: HUMAN MUTATION
• 影响因子: 3.9
• 作者: Rambla, Jordi;Baudis, Michael;Ariosa, Roberto;Beck, Tim;Fromont, Lauren A.;Navarro, Arcadi;Paloots, Rahel;Rueda, Manuel;Saunders, Gary;Singh, Babita;Spalding, John D.;Tornroos, Juha;Vasallo, Claudia;Veal, Colin D.;Brookes, Anthony J.
• 通讯作者: Brookes, Anthony J.

Twist exome capture allows for lower average sequence coverage in clinical exome sequencing.

• DOI: 10.1186/s40246-023-00485-5
• 发表时间: 2023-05-03
• 期刊: Human genomics
• 影响因子: 4.5