Alleviate: Hub for Pain
Lead Research Organisation:
University of Dundee
Department Name: Population Health and Genomics
Abstract
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
- 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
Technical Summary
The Alleviate will adopt a hybrid architecture: each group donating a pain dataset will choose whether to use the centralised hub or act as a federated node based upon data governance, size and complexity of the data and technical feasibility. The Research Data Management Platform (RDMP) open-source software tool will be utilised to curate, clean and transform data and automatically upload metadata and data dictionaries into the HDR Gateway.
Within each federated node, a pseudonymised version of the data will be made available within a secure VM so that it can be queried by federation software integrated into the HDR Gateway. This will enable researchers and innovators to discover what data is available for pain research across the UK and run high level meta-analysis across the datasets to find relevant cohorts. Such capability will support the research community to find relevant datasets which can be efficiently re-used and support recruitment to clinical trials. Alleviate will automate the process to extract research project specific data from across the federated network into a single TRE, streamlining access to data once data governance approvals have been granted.
Alleviate will upload pain specific phenotypes into the HDR phenotype portal.
The Alleviate hybrid secure cloud Trusted Research Environment (TRE) will be delivered in partnership with Amazon Web Services, building on an existing successful collaboration over the past year. The environment will provide Next Generation capabilities including:
- A suite of regularly updated, out-the-box software tools supporting machine learning (ML) and artificial intelligence (AI) development, statistical analysis and data management
- Improved support for multi-modal data cohorts including imaging & genomics integration
- Rapid scalability / elasticity / flexibility - as project demands require
- Reduced capital investment in new physical infrastructure
- High-availability
- On-Demand Self-Service
Within each federated node, a pseudonymised version of the data will be made available within a secure VM so that it can be queried by federation software integrated into the HDR Gateway. This will enable researchers and innovators to discover what data is available for pain research across the UK and run high level meta-analysis across the datasets to find relevant cohorts. Such capability will support the research community to find relevant datasets which can be efficiently re-used and support recruitment to clinical trials. Alleviate will automate the process to extract research project specific data from across the federated network into a single TRE, streamlining access to data once data governance approvals have been granted.
Alleviate will upload pain specific phenotypes into the HDR phenotype portal.
The Alleviate hybrid secure cloud Trusted Research Environment (TRE) will be delivered in partnership with Amazon Web Services, building on an existing successful collaboration over the past year. The environment will provide Next Generation capabilities including:
- A suite of regularly updated, out-the-box software tools supporting machine learning (ML) and artificial intelligence (AI) development, statistical analysis and data management
- Improved support for multi-modal data cohorts including imaging & genomics integration
- Rapid scalability / elasticity / flexibility - as project demands require
- Reduced capital investment in new physical infrastructure
- High-availability
- On-Demand Self-Service
Publications
Laskawska MS
(2022)
The core minimum dataset for measuring pain outcomes in pain services across Scotland. Developing and testing a brief multi-dimensional questionnaire.
in British journal of pain
Jefferson E
(2022)
The COVID - Curated and Open aNalysis aNd rEsearCh plaTform (CO-CONNECT).
in International Journal of Population Data Science
Jefferson E
(2022)
A Hybrid Architecture (CO-CONNECT) to Facilitate Rapid Discovery and Access to Data Across the United Kingdom in Response to the COVID-19 Pandemic: Development Study.
in Journal of medical Internet research
Smith B
(2023)
Patient engagement in pain research: no gain without the people in pain
in Pain
Hébert HL
(2023)
Big data, big consortia, and pain: UK Biobank, PAINSTORM, and DOLORisk.
in Pain reports
Milligan G
(2023)
The Alleviate Advanced Pain Discovery Platform Data Hub
Description | BY-COVID |
Amount | € 12,000,000 (EUR) |
Funding ID | 101046203 |
Organisation | European Commission H2020 |
Sector | Public |
Country | Belgium |
Start | 07/2022 |
End | 09/2024 |
Description | Guidelines and Resources for AI Model Access from TrusTEd Researchenvironments (GRAIMatter) |
Amount | £315,488 (GBP) |
Funding ID | MC_PC_21033 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 01/2022 |
End | 08/2022 |
Description | Trusted Research Environment and Enclave for Hosting Open Original Science Exploration (TREEHOOSE) |
Amount | £202,664 (GBP) |
Funding ID | MC_PC_21032 |
Organisation | Medical Research Council (MRC) |
Sector | Public |
Country | United Kingdom |
Start | 01/2022 |
End | 08/2022 |
Description | Collaboration with PIONEER Data Hub |
Organisation | University Hospitals Birmingham NHS Foundation Trust |
Country | United Kingdom |
Sector | Public |
PI Contribution | Shared knowledge of data sharing and data types within the OMOP common data model. |
Collaborator Contribution | Shared knowledge of longterm sustainability. |
Impact | None yet. |
Start Year | 2022 |
Description | Collaboration with PIONEER Data Hub |
Organisation | University of Birmingham |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Shared knowledge of data sharing and data types within the OMOP common data model. |
Collaborator Contribution | Shared knowledge of longterm sustainability. |
Impact | None yet. |
Start Year | 2022 |
Description | Collaborations with other HDR UK DATA MIND Hub |
Organisation | Swansea University |
Department | College of Medicine |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Working across the hubs to streamline activities and learn from each other |
Collaborator Contribution | Shared methodology |
Impact | Shared methodology |
Start Year | 2021 |
Description | Advanced Pain Discovery Platform Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Presenation at the Advanced Pain Discovery Platform Conference |
Year(s) Of Engagement Activity | 2022 |
Description | Advanced Pain Discovery Platform consortia and data hub team 'kick off' |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | . |
Year(s) Of Engagement Activity | 2021 |
Description | Alleviate - the Advanced Pain Discovery Platform |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Invited speaker to present details of the Alleviate APDP data hub to an audience of researchers, clinicians and public memebers. |
Year(s) Of Engagement Activity | 2022 |
Description | Alleviate Hub for Pain - Public Launch |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | Advanced Pain Discovery Platform Public Launch Webinar |
Year(s) Of Engagement Activity | 2022 |
Description | Alleviate describer video |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | A youtube video was created to describe the purpose of the Alleviate project in an engaging and approachable manner. The project is very technical and therefore benefits from having many different ways of communicating with non-experts. |
Year(s) Of Engagement Activity | 2022 |
URL | https://youtu.be/Rwnj-OmtaHQ |
Description | Alleviate website |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | . |
Year(s) Of Engagement Activity | 2022 |
URL | https://sites.dundee.ac.uk/alleviate |
Description | Cambridge Spark Lecture Series |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Industry/Business |
Results and Impact | Presentation: Overcoming the Challenges of Providing Access to Population Scale, Routinely Collected Health and Imaging Data for AI Development whilst Protecting Patient Confidentiality. |
Year(s) Of Engagement Activity | 2022 |
Description | HDR UK Community Meeting - Scotland (speaker) |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Other audiences |
Results and Impact | Invited speaker to HDR UK Community Meeting (Scotland) - one of a series of meetings intended to build partnerships and collaborations across the health data research community. Presentation: The Technology Ecosystem, Phenomics and Prognostic Atlas. |
Year(s) Of Engagement Activity | 2022 |
Description | HDR UK Science and Infrastructure Delivery Group |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | . |
Year(s) Of Engagement Activity | 2021 |
Description | How will our research help people living with chronic pain? |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Supporters |
Results and Impact | . |
Year(s) Of Engagement Activity | 2021 |
URL | http://www.versusarthritis.org/news/2021/may/how-will-our-research-help-people-living-with-chronic-p... |
Description | Introduction video for Alleviate |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | This a person with lived experience-focused online video describing the significance and importance of the Alleviate Data Hub project. |
Year(s) Of Engagement Activity | 2022 |
URL | https://youtu.be/ujW6qOlDUG8 |
Description | Launch of Alleviate - our Advanced Pain Discovery Platform (APDP) Hub |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | . |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.hdruk.ac.uk/helping-with-health-data/health-data-research-hubs/alleviate/ |
Description | Major funding success for research into chronic pain |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | . |
Year(s) Of Engagement Activity | 2021 |
URL | https://www.dundee.ac.uk/stories/major-funding-success-research-chronic-pain |
Description | New data hub and research into chronic pain |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | . |
Year(s) Of Engagement Activity | 2021 |
URL | http://www.cambridgenetwork.co.uk/news/new-data-hub-and-research-chronic-pain |
Description | Onlion patient community meeting |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | This online event organised by the Alleviate PPIE team was set up to re-engage with the patient community. We talked about the project aims and objectives and fielded questions about it. We also solicted comments and suggestions of next steps in the project. |
Year(s) Of Engagement Activity | 2023 |
Description | Overcoming the Challenges of Providing Access to Population Scale, Routinely Collected Health and Imaging Data for AI Development whilst Protecting Patient Confidentiality |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Industry/Business |
Results and Impact | Presentation to the AI summit in London covering the work of PICTURES, CO-CONNECT and GRAIMATTER |
Year(s) Of Engagement Activity | 2022 |
Description | Podcast - Health Data Science Black Internship Programme |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | This podcast discusses the HDR UK involvement in the Black Internship programme and there were contributions from Dr Christian Cole and HDR UK intern Anthony Ehimare. |
Year(s) Of Engagement Activity | 2022 |
URL | https://soundcloud.com/streamdna/fika-episode-28-health-data-science-black-internship-programme |
Description | Presentation at HDR UK Tech meeting 6th Feb |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Presented the Alleviate and TRE technology developments to an HDR UK technology workshop. |
Year(s) Of Engagement Activity | 2023 |
Description | Press release of change of leadership in project |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Media (as a channel to the public) |
Results and Impact | Announcement of changes of leadership in Alleviate |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.dundee.ac.uk/stories/alleviate-project-update-new-leadership-roles |
Description | UK data Hub to advance necessary research into chronic pain |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Health Data Research UK (HDR UK), the Medical Research Council (MRC) and Versus Arthritis announced a new Hub called Alleviate: APDP Pain Research Data Hub (Alleviate Hub); advancing necessary research into chronic pain. |
Year(s) Of Engagement Activity | 2021 |
URL | https://www.hdruk.ac.uk/news/uk-data-hub-to-advance-necessary-research-into-chronic-pain/?utm_source... |
Description | Versus Arthritis 3rd Annual Pain Research Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Keynote speaker: Big data for patient benefit: Opportunities for pain research. Following the conference, attended by many APDP Members, several pharmaceutical companies made contact with Alleviate. In addition, Alleviate has been approached to act as a consultant to work with Wellcome Trust on the feasibility of creating a Pain Data prize, with funding associated. |
Year(s) Of Engagement Activity | 2021 |
URL | https://www.nottingham.ac.uk/paincentre/documents/conferences/2022/2022-conference-flyer.pdf |