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

出于医疗保健和研究目的，需要将不同的患者数据集联系起来，并使其易于查找。这需要一种统一的国家方法，旨在保护患者隐私，同时以集中和多方（联邦）联合的方式运作。NHS digital正在与SME Privitar合作，加密和链接国家和地区收集的集中数据集（例如，通过LHCREs）。为了补充这一点，还需要将兼容的方法应用于联合资源——包括区域资源和主题资源。然后，需要以技术上和道德上安全的方式，使个体患者的可链接数据集易于共同发现，作为访问和分析的前奏。我们提出了一个Midlands项目来展示这样一个解决方案——包括数据所有者、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网络，以大量的“LLR”GP记录（Leicester, Leicestershire, Rutland）为基础。该网络还将涵盖其他地区初级保健数据、二级保健记录和生物库/队列数据。一个关于多重疾病的案例研究将为该系统的详细设计提供信息和测试，一个多学科监督委员会将确保可扩展性和国家相关性。

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.