Infrastructure and Services - Technology Services Ecosystem
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
The UK has incredible information resources, ranging from NHS data collected as part of patient care to custom data collected for research projects such as the genetic information on human disease in the UK Biobank. Protecting patient information has always been one of the highest priorities for these resources, making it difficult for researchers to combine the information held in different places. Unfortunately, this means we are missing opportunities to answer questions about human health, disease and care.
This work will bring together experts from across the UK to develop new ways to use the information held in different places, while still keeping individual patient identities private. The outputs will directly support HDR UK’s ambitious projects, while setting up foundations that will enable the wider research community to make discoveries that improve people’s lives.
This work will bring together experts from across the UK to develop new ways to use the information held in different places, while still keeping individual patient identities private. The outputs will directly support HDR UK’s ambitious projects, while setting up foundations that will enable the wider research community to make discoveries that improve people’s lives.
Technical Summary
This work is funded by the UKRI Medical Research Council, UKRI Engineering and Physical Sciences Research Council, UKRI Economic and Social Research Council, Department of Health and Social Care, National Institute for Health Research (England), Chief Scientist Office (Scottish Government), Health and Care Research Wales, Public Health Agency HSC (Northern Ireland), British Heart Foundation and Cancer Research UK
HDR UK's vision is to enable FAIR access to population scale data at depth and breadth, enabling linkage of data from many custodians, and federated analyses across Trusted Research Environments (TREs) for many health data researchers across the UK and globally.
This pillar will bring together a UK-wide team of leading technologists, and data scientists from across academia, TRE providers, industry and the NHS all committed to the assembly of an ecosystem of services. Embedding a collaborative, federated delivery model will enable greater patient and public benefit than any single organisation can achieve in isolation, whilst still maintaining autonomy of all involved.
HDR UK’s independence, convening power and deep technical skills allows the Institute to play a distinctive role in the technology ecosystem. HDR UK will enable streamlined data access through the Gateway and facilitate the assembly of tools, technologies, standards and approach for federated data analysis across multiple TREs.
Aim
The pillar will build on the technical foundations established by HDR UK in the last five years, together with services provided by national and international partners to:
1. Enable streamlined access to data through the Gateway in an approach which meets the needs of the research data users, data custodians and TRE providers
2. Deliver a portfolio of interoperable and integrated services across TREs, to enable new federated discovery and analytics capabilities, prioritised according to user needs.
3. Support the development of an open, collaborative, trustworthy and secure approach that is adaptable to the changing landscape
Impact and legacy
The Gateway and other core services will provide rapid data discovery, and faster and wider data access for users to seamlessly discover and access a vast range of UK health and related datasets. The Gateway, the TRE ecosystem and federated analytics will together provide an open development community, increasing the number of FAIR datasets and tools, enhancing the overall ecosystem. Pillar 1 will also enhance the technical capacity and capability across the HDR UK network, driving an open standards-based development community in the UK and globally.
The federation of analysis across TREs provides impact by increasing connectivity across TREs, delivering new data linkage models, services, the development of analysis methods, as well as growing analytical capacity.
The Gateway already hosts 720 datasets of which 432 datasets include high quality technical metadata The work of the Technology Services Ecosystem pillar will extend this legacy by addition of new metadata (individual level data remains with TREs) provision of new programmatic models of access and will inform the future approach to delivery of services and cross TRE integration/analytics.
For patients, the work undertaken in this pillar will enable analyses to be more efficient, scalable and applied to larger volumes of data. In turn, this will enable more detailed, faster analyses to answer the research questions which will make a difference to people’s lives.
HDR UK's vision is to enable FAIR access to population scale data at depth and breadth, enabling linkage of data from many custodians, and federated analyses across Trusted Research Environments (TREs) for many health data researchers across the UK and globally.
This pillar will bring together a UK-wide team of leading technologists, and data scientists from across academia, TRE providers, industry and the NHS all committed to the assembly of an ecosystem of services. Embedding a collaborative, federated delivery model will enable greater patient and public benefit than any single organisation can achieve in isolation, whilst still maintaining autonomy of all involved.
HDR UK’s independence, convening power and deep technical skills allows the Institute to play a distinctive role in the technology ecosystem. HDR UK will enable streamlined data access through the Gateway and facilitate the assembly of tools, technologies, standards and approach for federated data analysis across multiple TREs.
Aim
The pillar will build on the technical foundations established by HDR UK in the last five years, together with services provided by national and international partners to:
1. Enable streamlined access to data through the Gateway in an approach which meets the needs of the research data users, data custodians and TRE providers
2. Deliver a portfolio of interoperable and integrated services across TREs, to enable new federated discovery and analytics capabilities, prioritised according to user needs.
3. Support the development of an open, collaborative, trustworthy and secure approach that is adaptable to the changing landscape
Impact and legacy
The Gateway and other core services will provide rapid data discovery, and faster and wider data access for users to seamlessly discover and access a vast range of UK health and related datasets. The Gateway, the TRE ecosystem and federated analytics will together provide an open development community, increasing the number of FAIR datasets and tools, enhancing the overall ecosystem. Pillar 1 will also enhance the technical capacity and capability across the HDR UK network, driving an open standards-based development community in the UK and globally.
The federation of analysis across TREs provides impact by increasing connectivity across TREs, delivering new data linkage models, services, the development of analysis methods, as well as growing analytical capacity.
The Gateway already hosts 720 datasets of which 432 datasets include high quality technical metadata The work of the Technology Services Ecosystem pillar will extend this legacy by addition of new metadata (individual level data remains with TREs) provision of new programmatic models of access and will inform the future approach to delivery of services and cross TRE integration/analytics.
For patients, the work undertaken in this pillar will enable analyses to be more efficient, scalable and applied to larger volumes of data. In turn, this will enable more detailed, faster analyses to answer the research questions which will make a difference to people’s lives.
Publications
Christian Cole
(2023)
SACRO: Semi-Automated Checking of Research Outputs
Esma Mansouri-Benssass
(2023)
Disclosure control of machine learning models from trusted research environments (TRE): New challenges and opportunities
in cell.om/heliyon
Kerasidou C
(2023)
Machine learning models, trusted research environments and UK health data: ensuring a safe and beneficial future for AI development in healthcare
in Journal of Medical Ethics
Ritchie F
(2023)
Machine learning models in trusted research environments -- understanding operational risks
in International Journal of Population Data Science
| Description | A New National Purpose: Leading the Biotech Revolution |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://www.institute.global/insights/politics-and-governance/a-new-national-purpose-leading-the-bio... |
| Description | Creating a national platform for powerful molecular studies of multiple conditions: the HDRUK multiomics consortium |
| Amount | £1,088,605 (GBP) |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 07/2020 |
| End | 08/2022 |
| Description | EOSC-ENTRUST: A European Network of TRUSTed research environments |
| Amount | £155,659 (GBP) |
| Funding ID | 10104655 |
| Organisation | Innovate UK |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2024 |
| End | 02/2027 |
| Description | MIREDA (Mother and Infant Research Electronic Data Analysis) Partnership |
| Amount | £1,236,698 (GBP) |
| Funding ID | MR/X02055X/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2023 |
| End | 06/2026 |
| Description | Standardising and Deploying Sensitive Data Research Passports: SDR-Passport |
| Amount | £1,000,000 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 03/2025 |
| Title | Five Safes RO-Crate |
| Description | Five Safes RO-Crates enable the exchange of query requests and results between analysis clients and TREs while ensuring that the access is safe and the process transparent. Included within its specification are eight steps that ensure that the RO-Crate's metadata for safe data, safe people, safe projects, safe settings and safe outputs are reviewed according to Five Safes principles. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | It is to be used in the HDR UK QQ2 Federated Analytics workstream and the EOSC-ENTRUST EU Horizon Europe project to create a European network of trusted research environments for sensitive data and to drive European interoperability by joint development of a common blueprint for federated data access and analysis. |
| URL | https://trefx.uk/5s-crate/ |
| Title | 850 dataset descriptions (metadata) discoverable via the Health Data Research Gateway |
| Description | As of Feb 2024, 850 descriptions of health datasets from across the UK and internationally are available to discover via the Gateway platform. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | As of Feb 2024, 850 descriptions of health datasets from across the UK and internationally are available to discover via the Gateway platform. (current version of Gateway) |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Datasets |
| Description | ELIXIR Workflow Execution Service |
| Organisation | Barcelona Supercomputing Center |
| Country | Spain |
| Sector | Public |
| PI Contribution | The ELIXIR WfExS develpoed by the Barcelona Supercomputing Centeris used by the TRE-FX project to execute workflows in TREs. |
| Collaborator Contribution | They contributed the WfExS and made revisions |
| Impact | The EU Project EOSC-ENTRUST - https://eosc-entrust.eu/, starting 2024. The WfExS Partners in Barcelona and the TRE-FX project partners will work together on federated analytics development using workflows and the Five Safes RO-Crate |
| Start Year | 2023 |
| Description | HDR UK joins ELIXIR-UK |
| Organisation | ELIXIR |
| Department | ELIXIR UK |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | By joining ELIXIR-UK, HDR UK brings its expertise in health data science to the network. Since being founded in 2018, the Institute has transformed the use of large-scale health data for research, enabled by the application of cutting-edge data science approaches - including the use of Trusted Research Environments - to address some of the most pressing public health challenges in society. Our strategy over the next five years is to increase the scale, quality, speed and impact of health data research. Being a member of ELIXIR-UK both complements and enhances HDR UK's continued efforts to accelerate the trustworthy use of health and related data for research. |
| Collaborator Contribution | ELIXIR-UK offers numerous benefits and opportunities to support, learn from and add value to this agenda through its extensive scientific programmes and community building activities. |
| Impact | Emily Jefferson, CTO of HDR UK has joined the ELIXIR-UK steering committee as the HDR UK representative. |
| Start Year | 2023 |
| Title | Cohort Discovery Service |
| Description | Cohort Discovery is a new Gateway feature that will allow users to carry out a more specific search and assessment on datasets listed in the Gateway to improve the discovery of datasets. Using the tool users can search across multiple datasets to find cohorts (groups) of patients with specific, defined characteristics (e.g patients that don't smoke aged between 18-30 and who live in England). We hope the tool will save both researchers time in finding datasets they need for their research, and also save data custodians time, by minimising enquiries to them about the content of the datasets they hold. Statistical disclosure control policies are in place by default by data custodians on the query results, so low numbers of patients will be excluded to minimise any potential risk of identification. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Impact | Nine data custodians have been onboarded into the Cohort Discovery Service which covers a population of 51K subjects. Total subjects discoverable via Cohort Discovery - 41.8K from 8 datasets across: Conditions - 184 Observations - 24 Measurements - 264 Drugs/Medication - 4 Demographics - 18 |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Courses on the Innovation Gateway |
| Description | Courses and qualifications related to health data research |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Allows users to search for relevant courses and qualifications |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Courses |
| Title | Data Use Register & Data Use Widget |
| Description | A data use register (also known as a data release register or list of approved projects) offers the public a clear record of how their data is being used, by who and most importantly for what purpose. The Gateway has implemented a Data Use Register to improve the transparency and visibility of research projects undertaken across our Alliance data custodians. A widget for the data use register is also available and aims to provide further transparency in the use of health data for research by making data uses more accessible. Once embedded in a custodian's website, a clickable button takes visitors from a custodian's webpage to the Gateway data use register - prefiltered to display their data uses only - in a single step. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Improved transparency of research Improved discoverability of research Better coordination and standardisation of data use reporting |
| URL | https://web.www.healthdatagateway.org/search?search=&tab=Datauses |
| Title | Gateway Data Access Request Service |
| Description | Our ambition is for the Gateway to support a streamlined, proportionate approach to access requests based on the five safes model for research and innovation uses with a clearpublic benefit, in line with the Principles for Participation. We aim to make life easier for both requestors and decision makers through a combinationof automation, built-in validation, transparency of progress and the capability to hostvirtual data access request panels. The intention is to build on existing cross-sector best practice both nationally across the UKand internationally. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | For data custodians with existing 'in house' web-based workflow solutions, the module provides validated inputs to their approvals processes andreceive time stamped progress updates for key process points. For data custodians with 'MS Word' based documentation and offline workflow, the module helps them harmonise and streamline theirapproach and provide a scalable, web-based workflow. For new data custodians, the module provides the opportunity to move straight to a 'best of breed' web-based access management request solution. The Gateway provides allows researchers communicate with data custodians directly and confirm data sharing requirements before requesting access, which saves time. |
| URL | https://www.healthdatagateway.org/about/data-access-request-process |
| Title | Gateway Federated Metadata Onboarding Service |
| Description | Federated metadata onboarding allows data providers to synchronise existing metadata catalogues with the Gateway |
| Type Of Technology | Webtool/Application |
| Year Produced | 2023 |
| Open Source License? | Yes |
| Impact | Synchronising metadata catalogues means researchers can view the most up to date descriptions of health datasets and data providers only have to maintain a single source of truth |
| Title | Gateway Metadata Onboarding Service |
| Description | The metadata onboarding form enables data custodians to make their datasets findable through the Gateway by providing rich metadata descriptions of their datasets. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Provides an opportunity for datasets to be pulled into the Gateway from external metadata catalogues |
| Title | Gateway Search Service |
| Description | The Health Data Research Innovation Gateway is a common entry point for researchers and innovators to search for and find datasets of interest and to request access to. It is possible to search for health datasets and health data assets via a keyword search and filtering options. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Gateway search is based on the HDR UK dataset specification, which is an Alliance-approved standard for describing health datasets, reviewed and recreated with researcher discovery in mind. It includes summary information about the dataset and descriptions of the technical detail of the tables and columns held within the dataset. The standard descriptions allow potential data applicants to understand and assess the usability of data without enquiring directly, saving time for everyone. |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Datasets |
| Title | HDR Cohort Discovery / TRE-FX / RQuest integration |
| Description | It allows compatibility between the work of TRE-FX, the HDR Programme (Cohort Discovery) and BC Platforms software |
| Type Of Technology | Software |
| Year Produced | 2023 |
| Open Source License? | Yes |
| Impact | Now being assessed for use in the NHS England SDE Programme |
| URL | https://github.com/Health-Informatics-UoN/rquest-tools |
| Title | HDRUK CARROT_Mapper v2 |
| Description | Software which enables federated cohort discovery across cohorts of datasets . Developed with CO CONNECT project, and HDR UK Alleviate Data Hub |
| Type Of Technology | Software |
| Year Produced | 2023 |
| Open Source License? | Yes |
| Impact | https://github.com/HDRUK/CaRROT-Mapper |
| URL | https://co-connect.ac.uk/ |
| Title | HUTCH Softwarev2 |
| Description | Software developed with the DARE UK TRE-FX project that can be deployed within Trusted Research Environments to enable federated analysis |
| Type Of Technology | Software |
| Year Produced | 2023 |
| Open Source License? | Yes |
| Impact | DARE UK TRE FX report: https://zenodo.org/records/10055354 |
| Title | Health Data Research Gateway |
| Description | Health datasets in the UK are held by thousands of different organisations in the UK. It can therefore be difficult for researchers, innovators and also members of the public and patients, to discover what datasets exist. The Gateway was established in 2020 as a common entry point for researchers and innovators to discover and request access to UK health-related datasets. |
| Type Of Technology | Software |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | The Gateway lists information about each dataset (such as description, size of the population contained within that dataset, and the legal basis for access) that can help researchers and innovators decide whether a dataset could be useful to their research and help them to make further health discoveries. The Gateway was created with input from patients, the public, researchers and innovators working in health and care in the UK. Health Data Research UK is committed to its continued partnership with these groups as the Gateway develops. There are now over 3000 resources, such as tools, pblications and datasets available for researchers to discover, with over 2000 registered users. |
| URL | https://www.healthdatagateway.org/ |
| Title | Health Data Research Innovation Gateway |
| Description | The Health Data Research Innovation Gateway API service source code |
| Type Of Technology | Software |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Integrations with external services from industry - MetadataWorks, BC Platforms, FutureNHS |
| URL | https://doi.org/10.5281/zenodo.4461676 |
| Title | Health Data Research Innovation Gateway |
| Description | The Innovation Gateway provides a common entry point to discover and enquire about access to UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by members of the UK Health Data Research Alliance, such as a description, size of the population, and the legal basis for access. The Gateway includes the ability to search for research projects, publications and health data tools, such as those related to COVID-19. New interactive features provide a community forum for researchers to collaborate and connect and the ability to add research projects. The Innovation Gateway does not hold or store any datasets or patient or health data but rather acts as a portal to allow discovery of datasets and to request access to them for health research. To access the data, users need to sign in and then follow the access request process. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Both data custodians and researchers community are increasingly using the Innovation Gateway to drive use of health data in research. The Gateway provides a common front door for researchers to search, discover and understand data before they request access to it. On the other end, the Gateway is enabling a streamlined and harmonised access process for data custodians listing their data in the portal. By addressing one of the main issues in data driven research, access to data, the Gateway is enabling and accelerating discoveries based on safe and trustworthy use of health datasets. |
| URL | https://www.healthdatagateway.org/ |
| Title | Health Data Research UK GitHub Repository |
| Description | Open-source code for the Innovation Gateway |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Open-source code for the Innovation Gateway |
| URL | https://github.com/HDRUK |
| Title | Innovation Gateway Standards |
| Description | Innovation Gateway Standards |
| Type Of Technology | Software |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Adoption of the standards by the community - SAIL, NHS Digital, Research Data Scotland, Office of National Statistics |
| URL | https://github.com/HDRUK/schemata |
| Title | Phenotype Library |
| Description | The HDR UK Phenotype Library is a comprehensive, open access resource providing the research community with information, tools and phenotyping algorithms for UK electronic health records. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | When patients interact with physicians, or are admitted into hospital, information is collected electronically on their symptoms, diagnoses, laboratory test results, and prescriptions. This information is stored securely in Electronic Health Records (EHR) and is a valuable resource for researchers and clinicians for improving health and healthcare. EHRs are however of variable detail and quality and contain many inconsistencies. As a result, researchers and data providers spend considerable time creating complex computer programs to fix and statistically analyse the information in EHR and identify which patients have which disease. Currently, there is no means to share these tools across institutions in the UK resulting in duplication of effort. Reproducibility of research is also hampered as others do not have access to the precise methods and definitions used in a particular study. This project addresses these issues by creating an open resource for EHR users (researchers, clinicians, the NHS and data providers) to share their methods. |
| URL | https://phenotypes.healthdatagateway.org/ |
| Title | Publications on the Innovation Gateway |
| Description | Pre-prints papers and articles which site the use of health datasets for research (uploaded by Gateway users) |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Ability for users to search for publications alongside health datasets |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Papers |
| Title | Tools on the Innovation Gateway |
| Description | Software, scripts and useful resources (uploaded by Gateway users) |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Allows users to search for relevant tools, scripts and software to support them in their research. |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Tools |
| Title | Workflow for RQuest integration |
| Description | It is the workflow to process an HDR Cohort Discovery tool query |
| Type Of Technology | Software |
| Year Produced | 2023 |
| Open Source License? | Yes |
| Impact | Forms part of the work with NHS SDE Programme and HDR Programme |
| URL | https://workflowhub.eu/workflows/471 |
| Description | BC Platforms Event in Singapore |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | International meeting to hear about our work and to create further collaborations |
| Year(s) Of Engagement Activity | 2023 |
| Description | BY-COVID Project Joint Federated Analytics Workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | BY-COVID is the European Horizon Europe project for "BeYond COVID: pandemic preparedness. The TRE-FX approach for federated analytics and RO-Crates is being developed as a demonstrator for the Federated Analytics task |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://by-covid.org/ |
| Description | Beta testing API integration (datasets) reflection |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | As a continuation of the beta-testing engagement, a review session was scheduled to allow participants to share thoughts on the documentation of use of the APIs. The output of this would include feedback on information to identify areas for improvement |
| Year(s) Of Engagement Activity | 2024 |
| Description | Beta testing FMA integration (datasets) reflection |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | As a continuation of the beta-testing engagement, a review session was scheduled to allow participants to share thoughts on the documentation of the use of the FMA service. The output of this would include feedback on information to identify areas for improvement |
| Year(s) Of Engagement Activity | 2024 |
| Description | Cohort Discovery user journey workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | The purpose of this workshop was to highlight the current user journey between the Innovation Gateway platform and the Cohort Discovery platform. This included a show and tell of the existing process and then an engagement piece with the academic researchers who would be engaging with the platform. The aim of the engagement piece was to obtain user feedback on the journey and highlight areas for development, which could then feed into the development/evolution of the Innovation Gateway platform |
| Year(s) Of Engagement Activity | 2023 |
| Description | ELIXIR Bioinformatics Industry Forum |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Delivered a presentation and led a roundtable discussion on 21/11/23 |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://elixir-europe.org/events/elixir-bioinformatics-industry-forum-2023 |
| Description | ELIXIR Bioinformatics Industry Forum |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | ELIXIR Bioinformatics Industry Forum 2023, 2023-11-21, London, invited speaker, round table representation The annual ELIXIR Bioinformatics Industry Forum was a one-day event that brings together bioinformaticians and technical specialists to explore solutions to major challenges in the data-driven life science sector. the Forum theme was "Trusted research environments for sensitive data in the life sciences". The programme features a variety of presentations from industry and academia, offering the participants a chance to learn more about relevant initiatives and research breakthroughs in the area of TREs. The forum aimed to stimulate discussions among solution providers and enable potential collaborations. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://elixir-europe.org/events/elixir-bioinformatics-industry-forum-2023 |
| Description | Federated Learning Workshop: Share the Code |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | International workshop to develop common understandings for the deployment of federated learning tools. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Gateway dashboard requirements gathering (3 sessions) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | The activity was focused on engaging data custodians and data partners on the Gateway user interface to understand and gather their requirements. This was a total of 3 planned sessions in August with the aim of capturing a wide range of requirements from differnet data custodians and data partners. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR Gateway Landing Page design review (researchers) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | A series of 3 workshops were run throughout late October and early November with the focus being on presenting possible Gateway landing pages to researchers. The output of this meeting was that researchers would feedback on these design, how they found the user interface with the goal being that this feedback would be used to improve the user experience and user journey on the Gateway. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (1) - April 2023, Nottingham |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. At this metasprint, we met with colleagues from Nottingham University to discuss means of integrating the Tissue DIrectory Coorindation Centre (TDCC) metadata into the Gateway as well as an overview of the TRE-FX project, which is aiming to streamline how analysis tools access multiple TREs. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (2) - May 2023, Manchester |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. At this metasprint, we met with colleagues from Manchester University to discuss resources and solutions being developed from: - the Software Sustainability Institute (SSI), - NERC Digital Solutions - NHS FT Clinical Data Science Unit |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (3) - July 2023, Leeds |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. At this metasprint, we met with colleagues from Leeds University to discuss the Useable data - data standards workstream, Yorkshire & Humber Secure Data Environment SDE requirements and HDR UK North updates. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (4) - August 2023, Virtual |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | DR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (5) - October 2023, Virtual |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (6) - November 2023, Bristol |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. At this metasprint, we met with colleagues from UWE to discuss the SACRO project, the Southern Consortium and South West SDE. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HealTac Hackathon (NLP & Search) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Schools |
| Results and Impact | A hackathon was organised with UCL and the University of Manchester to run a focused exercise looking at how the Gateway could leverage different search technologies and NLP analysis to improve the search capabilities of the Gateway. The output of this was a series of options and demonstrated solutions that could be evaluated as possible search solutions, and NLP solutions to enhance data on the Gateway |
| Year(s) Of Engagement Activity | 2023 |
| Description | HealTac NLP workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | An engagement workshops with Manchester University and UCL about how we can display Tools as a resource in the Gateway and how we can categorise them in a more logical manner to make them more discoverable |
| Year(s) Of Engagement Activity | 2023 |
| Description | Information session for API/FMA integration testing (datasets) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | This was a presentation led by the team which highlighted the new API and FMA features that have been developed on the Gateway. These features were released as "beta" releases, with the purpose of this meeting was to demonstrate the features to users and then provide them with credentials to try the features out and provide feedback so we can improve the solution as a whole |
| Year(s) Of Engagement Activity | 2024 |
| Description | Invited Seminar The University of Auckland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited talk, strong collaboration now with Center for eResearch and their TRE team |
| Year(s) Of Engagement Activity | 2024 |
| Description | Invited expert panel speaker: Picking the right door. HealthTech Integrates London, 20/06/23 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Took part in an expert panel discussing how to speed up market access and adoption by healthcare providers, whether access to clinicians or access to the HMOs/NHS is still the biggest hurdle and whether different access systems for North America versus the European markets are needed. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.lifescienceintegrates.com/agenda/healthtech-integrates-2023/ |
| Description | Invited speaker: The Gateway: A single front door to the SDE Network. NHS SDE Network Conference. Oxford. 15/09/23 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Presentation on the Health Data Research Gateway with the NHS Research Secure Data Environments : outlining key features and services and opportunities to evolve the platform as the single front door for the network. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Invited talk at ELIXIR All Hands meeting 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | ELIXIR is the European Research Infrastructure for Life Science Data. The All Hands attracts 400 delegates. Presented invited talk Human Genomics and Translational Data 2024-28 symposium |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://elixir-events.eventscase.com/EN/elixirallhands2023/Agenda |
| Description | Keynote eResearch New Zealand |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Keynote at the eResearch Conference New Zealand 2024 https://eresearchnz.co.nz/. Developed links with New Zealand and Australian eResearch communities; several sessions discussed Trusted Research Environments and sensitive data. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://eresearchnz.co.nz/ |
| Description | Keynote speaker at N8CIR Digital Health community day 21st June 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Addressing barriers in health data research: Isaac Odiase (Product Owner for teh Gateway) led a presentation covering HDR UK's work towards providing innovative technical solutions to streamline the researcher journey, whilst adhering to data governance requirements. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://n8cir.org.uk/events/digital-health-community-day/ |
| Description | Keynote speaker: Towards Federated Analytics for Population Data. Precision Medicine & Real-World Data Conference - Singapore, 23/05/23 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Key note speaker, presented on experiences enabling a new UK infrastructure for finding and accessing population-wide data for research and public health analysis |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://info.bcplatforms.com/precision-medicine-and-rwd-conference-singapore-2023 |
| Description | Learning from Community developments |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | An engagement meeting was set up with a range of institutes from the wider community with 2 key objectives 1) to understand the software and solutions that the community has been developing that can be of value to the development of the Innovation Gateway solution 2) to hear about learning from the community who have developed the solutions. Including successes, pain points and opportunities |
| Year(s) Of Engagement Activity | 2023 |
| Description | Learning from Community developments (session 2) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | A follow-up engagement meeting was set up with a range of institutes from the wider technology community with 2 key objectives 1) to understand the software and solutions that the community has been developing that can be of value to the development of the Innovation Gateway solution 2) to hear about learning from the community who have developed the solutions. Including successes, pain points and opportunities |
| Year(s) Of Engagement Activity | 2023 |
| Description | Metadata Management Page Review |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | The focus of this workshop session was to engage with custodian partners who would be adding data into and using the Gateway solution to better understand their requirements for a metadata management platform. The output of this meeting was to obtain requirements and insights into useful features that could be developed on the Innovation Gateway |
| Year(s) Of Engagement Activity | 2023 |
| Description | NIHR Nottingham BRC Conference 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Delivered presentation on 8/12/2023 |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation at GA4GH Connect session "Cohort building from diverse phenotypic data" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A presentation delivered at GA4GH Connect session titled "Cohort building from diverse phenotypic data". |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.ga4gh.org/event/11th-plenary/ |
| Description | Presentation on Cohort Discovery at N8CIR half day online event for the Digital Health community |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation led by Isaac Odiase (Chief Product Owner for the Gateway) covering the types of data available from various organisations, how to access this data and how it is currently used by the Digital Health community. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Research Software Engineers (RSE) Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was an invited speaker to the Seventh Annual Research Software Engineering Conference. Presentation: Can convening a Technology Ecosystem help TREs to work together? |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://rsecon23.society-rse.org/ |
| Description | Research Software Engineers (RSE) Conference |
| 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 | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was an invited expert panel speaker at the Seventh Annual Research Software Engineering Conference. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://rsecon23.society-rse.org/ |
| Description | Researcher terminology workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | The terminology engagement workshop aimed to obtain an understanding of which medical concept vocabularies were typically used by researchers and how/if they would search by these medical concepts. The output of this would be an understanding of which mappings needed to be done by the Gateway as well as feeding back into filter designs as well as search matching |
| Year(s) Of Engagement Activity | 2023 |
| Description | Review 'Collections' filters with UK LLC team |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | The purpose of this session was to have a conversation with users of the Gateway who had in the past used the Collections feature on the platform with the intent of obtaining a better understanding of whether or not the feature was useful, and how it can be improved to be more useful to other users of the system. This was specifically focussed on the Collections feature and the filters surrounding Collections as part of the search functionality on the Gateway |
| Year(s) Of Engagement Activity | 2023 |
| Description | Review 'Collections' with former PIONEER employee |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | The purpose of this session was to have a conversation with a user of the Gateway who had in the past used the Collections feature on the platform with the intent of obtaining a better understanding whether or not the feature was useful, and how it can be improved to be more useful to other users of the system |
| Year(s) Of Engagement Activity | 2023 |
| Description | Review manual dataset metadata uploading workshops |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | This 2 part engagement was designed to engage with data providers who add data into the Gateway specifically around the metadata onboarding form in the platform. The output of this would be an understanding of features that data partners liked, as well as a series of improvements that can be made to the interface and functionality to the benefit of those who are entering data. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Search Results Improvement Demonstration & Feedback workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | This engagement workshop was set up to highlight the key improvements that were being planned to search and get feedback from researchers about the usefulness of the technologies/solutions we were thinking about implementing. We had specifically targeted researchers who had used the Gateway Search functionality in the past and highlighted there was area for improvement as well as some technologists within the community who were able to highlight how they had implemented similar approaches in their solutions. The purpose of this was to test the path we were following with search was the right one and get a clear understanding if this was an improvement over the existing solution that is beneficial to a researcher audience |
| Year(s) Of Engagement Activity | 2023 |
| Description | Synonyms for health data science searches |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | This workshop focused on engaging with researchers around the implementation of synonyms into the Gateway search solution. This would allow to manage of acronyms and synonyms to improve a researcher's search experience on the Gateway. The output of this workshop was an understanding of a range of synonyms that researchers may use to describe information, which has then been fed back into the Gateway solution |
| Year(s) Of Engagement Activity | 2024 |
| Description | TRE research community priorities - Landing Page Review |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | After a keynote to the SDE network attendees, a workshop was run which highlighted the proposed designs for the Gateway landing page. The purpose of this workshop was to present the designs and get feedback from the SDE networking about design and contribute to further developments/improvements that could be made |
| Year(s) Of Engagement Activity | 2023 |
| Description | Technology Services Ecosystem Community: Second Event - November 2023 |
| 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 | Following the success of the first Technology Ecosystem Community meeting in February 23, a second hybrid session was held in Manchester (November 23). The aim was to provide an opportunity for all groups developing software funded by or branded as HDR UK to meet in person and discuss technical areas of interest. As a result of this workshop, plans are underway to create an engaging and collaborative online space for technologists, technicians and technical support staff involved in health data research to share knowledge, collaborate on projects, and foster innovation. |
| Year(s) Of Engagement Activity | 2023 |
| Description | The Institute of Cancer Research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was an invited speaker at the Institute of Cancer Research. Presentation: Health Data Research (HDR) Technology and Data Strategy. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Tools categorisation to improve search filtering |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | A workshop with UCL and Manchester University was scheduled as a follow-up to the HealTac hackathon which was focussed on the filter categorisation for Tools on the Gateway. The purpose of this is that we can gain insight from NLP/AI experts around categorisation models available that we can leverage on the Gateway |
| Year(s) Of Engagement Activity | 2024 |
| Description | UK TRE Community Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was the keynote speaker at the UK TRE Community Meeting that was part of the RSE Conference. Presentation: Call to action! |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.com/e/uk-tre-community-september-meeting-tickets-676066472017 |
| Description | UK TRE Satellite Workshop at RSECon 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at RSECon2024 satellite Trusted Research Environments Satellite Meeting https://rsecon23.society-rse.org/satellite-events/ |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://rsecon23.society-rse.org/satellite-events/ |
| Description | Understand what linkages Researchers would like to see and how they would like to see it displayed. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | This workshop focused on looking at a Dataset landing page, presenting some design options for linkages to researchers to get an understanding of what they would find useful and if any additional linkages may be good to call out in the design. The outcome of this workshop was aimed at obtaining an understanding of which linkages are useful for a researcher to see when looking at a Dataset. Specifically to feed back into the design and user journey of the Gateway. |
| Year(s) Of Engagement Activity | 2023 |