Alleviate: Hub for Pain

我们对疼痛缓解中心的愿景是：-将现有的英国疼痛数据集转变为可查找、可访问、可互操作和可重复使用(FIRE)-将这些数据集与专家数据工程相链接，并集成到健康数据研究(HDR)英国网关-催化由国际研究人员和创新者进行负责任和值得信赖的分析我们全英国的财团将在疼痛研究领域的领先专家的指导下，并与NHS、高级疼痛发现平台(APDP)财团、有慢性疼痛生活经验的人(PWLE)和行业合作，为疼痛研究提供世界级的健康数据基础设施和服务。这个联盟有一个共同的愿望和承诺，那就是改变“数据即基础设施”的方法。不同数据集的保管人选择加入我们联盟的事实证明，需要开发新的改进的、更有效的方法，将所有人聚集在一个共同的方法下。Relipate将直接与PWLE合作，以最大限度地发挥影响和患者利益。我们已经与来自不同背景的9名代表举行了第一次原则上的会议，其中2名PWLE共同领导了公众和患者参与和参与工作方案。邓迪卫生信息学中心(HIC)拥有丰富的数据工程专业知识，十多年来一直在卫生数据科学和研究服务方面处于领先地位。使用由HIC管理的安全的ISO27001认证的可信研究环境(TRE)/Safe-Haven(其中数据安全和安全得到保证)，缓解将：-利用现有的开源软件和基础设施来协调和管理数据(研究队列和常规收集的医疗(和社会)保健数据)，简化访问和支持治理--提供现代、安全和灵活的设计，受益于HIC安全、可扩展的混合云“下一代”基础设施；在亚马逊网络服务(AWS)云计算专业知识的支持下，加强现有的成功合作伙伴关系-支持使用人工智能和机器学习(例如流行病学、临床、人口健康、基因组学、成像、心理、社会、生物学)对多模式数据进行分析-提供数据访问和管理的混合模型，即支持英国范围的数据联邦与集中化模型相结合(图1)。该模型还将支持未来的国际数据集-支持疼痛研究数据集和注册，促进它们的管理和进一步的合作，与其他HDR英国中心、相关临床数据集(例如心理健康、癌症)链接，并增强它们的能力和发现患者利益的潜力我们的财团拥有可观的跟踪记录：-在多中心疼痛相关数据方面的特定专业知识-疼痛研究领域的领先学者，涵盖影响疼痛的生物、心理和社会因素的一系列数据模式。我们的Co-I是4个不同APDP联盟投标的领先申请者-在地方、国家和全球层面的临床研究人员、PWLE、实验室科学家和数据科学家之间的合作经验-作为几个卫生委员会、苏格兰政府和许多英国和国际研究队列的数据处理器的经验-现有的HDR英国联盟成员，并与其他中心建立了强大的联系，例如，在规模上安全分析健康数据的TRE的保管人-领先的许多HDR英国倡议：表现学门户网站、苏格兰数据联合会、多组学项目、生物库管理软件、成像、开放式连接器、Atlas-使c.900个国家和国际研究项目成为服务提供者(c.5年)--包括组学在内的有效运作的‘大数据’管道，以探索慢性疼痛的生物-心理-社会模式--建立研究网络的经验，并可随时访问拥有200多个生物库的UKCRC组织目录和协调中心

Our vision for the Alleviate Hub for Pain is to:- Transform existing UK pain datasets to be Findable, Accessible, Interoperable and Reusable (FAIR)- Link these datasets with expert data engineering, integrated into the Health Data Research (HDR) UK Gateway- Catalyse responsible and trustworthy analysis by international researchers and innovatorsOur UK-wide consortium will deliver world class health data infrastructure and services for pain research, guided by leading experts in pain research and in partnership with the NHS, Advanced Pain Discovery Platform (APDP) consortia, people with lived experience of chronic pain (PWLE) and industry. This consortium has a common desire and a commitment for change to a "data as infrastructure" approach. The fact that custodians of diverse datasets have chosen to join our consortium is testament to the need to develop new improved, more efficient methods of bringing everyone together under a common approach. Alleviate will engage directly with PWLE to maximise impact and patient benefit. We have already held our first 'In-Principle' meeting with 9 representatives, from diverse backgrounds, with 2 PWLE co-leading the Public and Patient Involvement and Engagement Work Package. The Dundee Health Informatics Centre (HIC) has considerable data engineering expertise and has provided leadership in health data science and research services for over a decade. Using a secure ISO27001 certified Trusted Research Environment (TRE)/Safe-Haven (where data security and safety is guaranteed) managed by HIC, Alleviate will: - Leverage existing open-source software and infrastructure to curate and manage data (research cohorts and routinely collected health (and social) care data), streamline access and support governance - Provide a modern, secure, and flexible design, benefitting from HIC's secure, scalable hybrid cloud 'Next-Generation' infrastructure; supported by cloud computing expertise from Amazon Web Services (AWS), enhancing an existing successful partnership- Support analysis of multi-modal data using artificial intelligence and machine learning (e.g. epidemiological, clinical, population health, genomics, imaging, psychological, social, biological)- Deliver a hybrid model of data access and management, i.e. supporting UK-wide data federation combined with a centralised model (Figure.1). The model will also support international datasets in the future- Enable pain research datasets and registries, facilitating their curation and further collaboration, linking with other HDR UK Hubs, related clinical datasets (e.g. mental health, cancer) and boosting their power and discovery potential for patient benefitOur consortium has a considerable track record:- Specific expertise in multi-centre pain-related data- Leading academics in pain research covering the range of data modalities across biological, psychological and social factors that influence pain. Our Co-I's are leading applicants in 4 separate APDP consortia bids- Experience in collaborating between clinical researchers, PWLE, laboratory scientists and data scientists at local, national and global level- Experience as a data processor for several health boards, Scottish Government, and many UK and international research cohorts- Existing HDR UK Alliance members and strong links with other hubs e.g. Breathe - Custodians of a TRE for secure analysis of health data at scale - Leading many HDR UK initiatives: Phenomics portal, Scottish Data Federation, Multiomics project, Biorepository management software, Imaging, open Connector, ATLAS- Enabling c.900 national and international research projects as a service provider (c.5years)- 'Big-data' pipelines for efficient operation including omics to explore the biopsychosocial model of chronic pain- Experience of building research networks and with ready access to the UKCRC Tissue Directory and Coordination Centre of over 200 biobanks