Chronic pain researchers across the UK currently cannot easily share or combine their datasets, leaving valuable information locked in separate silos. The Alleviate Hub for Pain will build the digital infrastructure to change that. It will take existing pain research data—from clinical records, genomic sequences, brain scans, and patient-reported outcomes—and make them Findable, Accessible, Interoperable, and Reusable (FAIR). These datasets will be linked through the Health Data Research UK Gateway, using a secure Trusted Research Environment managed by the Dundee Health Informatics Centre. Patients with lived experience of chronic pain are co-leading the public engagement work package, ensuring the hub serves real needs. If successful, Alleviate will allow researchers across the UK and internationally to analyse combined multi-modal data using artificial intelligence and machine learning, without compromising patient privacy. This could accelerate discovery of the biological, psychological, and social factors that drive chronic pain, and ultimately lead to better treatments. The hub builds on an existing consortium that has enabled roughly 900 research projects over five years and has ready access to over 200 biobanks.
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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 innovators Our 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 benefit Our 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
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