Infrastructure and Services - The UK Health Data Research Alliance and Hub Network
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
Bringing together health related data and enabling researchers to improve people’s lives will require teamwork with experts across the UK. As it stands, the amount of variation in where and how health related information is stored is a significant obstacle to this game changing research. The Alliance has been active since 2019, bringing together NHS data holders, Universities, charities and industrial partners to identify common challenges and work together to enable better use of data. In the next five years Alliance membership will be extended to non data custodians and complementary groups, including Trade Assocations.
Alliance members play a central role in informing HDR UK’s activities in both building and improving the foundations to support health data research, enabling researchers to work in trustworthy ways across organisations and sources of health data, enabling research that has been impossible until now.
Alliance members play a central role in informing HDR UK’s activities in both building and improving the foundations to support health data research, enabling researchers to work in trustworthy ways across organisations and sources of health data, enabling research that has been impossible until now.
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
Uniting health data to enable discoveries that improve people’s lives will require deep collaboration among many communities and stakeholders to address the challenges of fragmentation, inconsistency and lack of standardisation that act as barriers to health data research.
HDR UK will build upon the success of the Alliance that was formed in 2019 as the forum to bring stakeholders together from around the UK to promote the development of high-quality standards, policies and tools based on community consensus. In the next five years HDR UK will continue to convene and grow the Alliance of UK data custodians, Health Data Research Hubs and academic centres NIHR Biomedical Research Centres, charities and partner organisations, and will include non data custodians and Trade Assocations, to establish and adopt best practice for the ethical use of UK health data for research at scale. The Alliance will identify common challenges and barriers to progress, develop and promote common solutions to overcome these barriers and convene the community regularly to share results and progress.
Alliance members will be supported to strengthen contributions to strategic planning for the health data infrastructure and technology ecosystem (actioned through HDR UK Infrastructure and Service and Driver Programme activities) and to leverage data and relationships. HDR UK will serve the Alliance to ensure it is 'member centric' and to support and enable Alliance activities with respect and authenticity. The impact will be to shape and enable all aspects of high-quality Research Data Infrastructure and Services and, ultimately, enable accredited health data scientists to work in a trustworthy way across organisational and infrastructure boundaries with minimal additional effort - within the UK and increasingly internationally.
Uniting health data to enable discoveries that improve people’s lives will require deep collaboration among many communities and stakeholders to address the challenges of fragmentation, inconsistency and lack of standardisation that act as barriers to health data research.
HDR UK will build upon the success of the Alliance that was formed in 2019 as the forum to bring stakeholders together from around the UK to promote the development of high-quality standards, policies and tools based on community consensus. In the next five years HDR UK will continue to convene and grow the Alliance of UK data custodians, Health Data Research Hubs and academic centres NIHR Biomedical Research Centres, charities and partner organisations, and will include non data custodians and Trade Assocations, to establish and adopt best practice for the ethical use of UK health data for research at scale. The Alliance will identify common challenges and barriers to progress, develop and promote common solutions to overcome these barriers and convene the community regularly to share results and progress.
Alliance members will be supported to strengthen contributions to strategic planning for the health data infrastructure and technology ecosystem (actioned through HDR UK Infrastructure and Service and Driver Programme activities) and to leverage data and relationships. HDR UK will serve the Alliance to ensure it is 'member centric' and to support and enable Alliance activities with respect and authenticity. The impact will be to shape and enable all aspects of high-quality Research Data Infrastructure and Services and, ultimately, enable accredited health data scientists to work in a trustworthy way across organisational and infrastructure boundaries with minimal additional effort - within the UK and increasingly internationally.
Organisations
- Health Data Research UK (Lead Research Organisation)
- MRC Dementias Platform UK (Collaboration)
- use MY data (Collaboration)
- University College London (Collaboration)
- UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST (Collaboration)
- UK Dementia Research Institute (Collaboration)
- Norfolk and Norwich University Hospitals NHS Foundation Trust (Collaboration)
- Wellcome Trust (Collaboration)
- BIOINDUSTRY ASSOCIATION (Collaboration)
- Association of Medical Research Charities (Collaboration)
- Association of the British Pharmaceutical Industry (Collaboration)
- Lancashire and South Cumbria NHS Foundation Trust (Collaboration)
- University of Sheffield (Collaboration)
- NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- ALDER HEY CHILDREN'S NHS FOUNDATION TRUST (Collaboration)
- NHS Education for Scotland (Collaboration)
- Royal Free London NHS Foundation Trust (Collaboration)
Publications
UK Health Data Research Alliance
(2023)
Workshop Report #4 - Diversity in Data: Ethnicity coding standards working group
UK Health Data Research Alliance
(2023)
December 2023 PEDRI-Alliance Working Group Report
UK Health Data Research Alliance
(2023)
UK Health Data Research Alliance Data Officer Group Report-September 2023
| Description | Alder Hey Children's NHS foundation Trust |
| Organisation | Alder Hey Children's NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | Association of British Pharmaceutical Industries (ABPI) |
| Organisation | Association of the British Pharmaceutical Industry |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | Association of Medical Research Charities (AMRC) |
| Organisation | Association of Medical Research Charities |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | BioIndustry Association (BIA) |
| Organisation | BioIndustry Association |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | Dementias Platform UK |
| Organisation | MRC Dementias Platform UK |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | Lancashire & South Cumbria NHS Foundation Trust |
| Organisation | Lancashire and South Cumbria NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | MRC Unit for Lifelong Health and Ageing - UCL |
| Organisation | University College London |
| Department | MRC Unit for Lifelong Health and Ageing |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | NHS Education for Scotland |
| Organisation | NHS Education for Scotland (NES) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Organisation | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | Norfolk and Norwich University Hospitals NHS Foundation Trust |
| Organisation | Norfolk and Norwich University Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | Royal Free London NHS Foundation Trust |
| Organisation | Royal Free London NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | UK Dementia Research Institute (UKDRI) |
| Organisation | UK Dementia Research Institute |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2024 |
| Description | Understanding Patient Data |
| Organisation | Wellcome Trust |
| Department | Understanding Patient Data |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | University Hospital Southampton NHS Foundation Trust |
| Organisation | University Hospital Southampton NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | University of Sheffield |
| Organisation | University of Sheffield |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | use MY data |
| Organisation | use MY data |
| Sector | Charity/Non Profit |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | 11 Dec 2023 - AI and Biomedicine Discussion Dinner |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | 12 July 2023 - Special Academy of Medical Sciences 25th anniversary reception |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | 12 Oct 2023 - Dutch Health-RI annual meeting (keynote speaker) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andrew Morris Keynote speaker |
| Year(s) Of Engagement Activity | 2023 |
| Description | 13 Dec - UK Biobank Scientific Conference |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.ukbiobank.ac.uk/learn-more-about-uk-biobank/scientific-conference-2023 |
| Description | 13 Nov 2023- Lecture: Oxford Martin School - Medicine in the 4th Industrial Revolution lecture |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Andrew Morris delivered lecture |
| Year(s) Of Engagement Activity | 2023 |
| Description | 16 Oct - HDR-UK / MET OFFICE MEETING: DATA DISCUSSIONS |
| 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 | Working meeting to discuss partnership work with MET Office and HDR UK Driver Programmes |
| Year(s) Of Engagement Activity | 2023 |
| Description | 19 Oct 2023 - Health Data Subgroup Biannual meeting |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | 24 April 2023 - Committing to Change Shared Commitment to Public Involvement workshop |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | 25 April 2023 - Nuffield - An ethical future for ageing: challenging ageism and inequity for better research and innovation |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | 29 Nov 2023 - MSC HDR UK Partnership - chaired the Technology Enabled Healthcare Delivery: Creating a curriculum and ways of working fit for the future discussion |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Andrew Morris chaired |
| Year(s) Of Engagement Activity | 2023 |
| Description | 29 Sep 2023 - Delivered the Fitzgerald Peel Lecture at Scottish Society of Physicians 65th Annual Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andrew Morris presented |
| Year(s) Of Engagement Activity | 2023 |
| Description | 3 Nov 2023 - UK MND Research Institute Launch Event |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | 30 May 2023 - Ditchley - Science and Technology 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 | Andrew Morris participated |
| Year(s) Of Engagement Activity | 2023 |
| Description | 31 Oct 2023 CSO AT 50 - Scotland's Health Research and Innovation Conference 50 years of advancing healthcare |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | 5 Dec 2023 - Annual Fellows Meeting and Jean Shanks Lecture 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andrew Morris lecutred. |
| Year(s) Of Engagement Activity | 2023 |
| Description | 5 Dec 2023 - Our Future Health invitation Evening Reception |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | 6 Dec 2023 - IQVIA UK NHS & Life Science Leaders Forum |
| 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 | Andrew Morris participated |
| Year(s) Of Engagement Activity | 2023 |
| Description | 6 Oct 2023 - Tenovus Scotland Research Symposium (Keynote Speaker) |
| 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 was Andrew Morris |
| Year(s) Of Engagement Activity | 2023 |
| Description | 7 Aug 2023 - Unblocking GP Data for Researchers event |
| 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 | Andrew Morris attended. This was event held by Secretary of State for Health's team in DHSC - attended by Chief Medical Officer for UK, National Statistician and other UK wide senior stakeholders - Cathie Sudlow was also at this and was invited to Chair it. Insights will feed into Sudlow Review. |
| Year(s) Of Engagement Activity | 2023 |
| Description | 9 June 2023 - LifeArc - MND workshop |
| 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 | Andrew Morris participated |
| Year(s) Of Engagement Activity | 2023 |
| Description | Alliance Community Bulletin - Apr 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/09/Alliance-community-bulletin-April-2023.pdf |
| Description | Alliance Community Bulletin - Aug 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/09/Alliance-community-bulletin-August-2023.pdf |
| Description | Alliance Community Bulletin - Dec 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/12/Alliance-Community-Bulletin-December-2023.pdf |
| Description | Alliance Community Bulletin - Jul 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/09/Alliance-community-bulletin-July-2023.pdf |
| Description | Alliance Community Bulletin - Jun 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/09/Alliance-community-bulletin-June-2023.pdf |
| Description | Alliance Community Bulletin - May 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/09/Alliance-community-bulletin-May-2023.pdf |
| Description | Alliance Community Bulletin - Nov 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/12/Alliance-community-bulletin-November-2023.pdf |
| Description | Alliance Community Bulletin - Oct 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/12/Alliance-community-bulletin-October-2023.pdf |
| Description | Alliance Community Bulletin - Sep 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/12/Alliance-community-bulletin-September-2023.pdf |
| Description | Alliance and Hubs Data Officers Group Meeting - Sep 23 |
| 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 | We bring together data officers from across the Alliance to oversee, coordinate, and produce Alliance guidance and policy regarding: data quality, data standards, meta data standards, dataset publishing, data provenance, ontology / terminology services and use. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://zenodo.org/records/10362543 |
| Description | Alliance/PEDRI partnership meeting - Dec 23 |
| 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 | This newly-formed Public Involvement and Engagement working group, convened by the Alliance in partnership with PEDRI (Public Engagement in Data Research Initiative) met to discuss key considerations regarding the adoption of standards for public involvement and engagement in the context of data science. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://zenodo.org/records/10473491 |
| Description | Anaesthesia's Annual Congress, 13-15th Sept EICC, Edinburgh. "structured/unstructured data saving live |
| 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 | Cathie Sudlow delivered keynote lecture |
| Year(s) Of Engagement Activity | 2023 |
| Description | Analyst X Strategic Partners meet up |
| 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 | Discussions and plans around data analytics priorities in 2023 and beyond. The event aimed to bring together healthcare professionals, members of the public and industry to understand priorities and ways to collaborate to maximise use of health data assets in the UK. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.linkedin.com/pulse/analystx-may-update-analystx/ |
| Description | Apprenticeships - boosting careers and benefitting employers |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | To mark National Apprenticeship Week we interviewed Stephanie Parrott about her time as a senior manager with HDR UK. We also discussed her Level 3 Data Citizen Apprenticeship for which she has been shortlisted for the Data Citizen Apprentice of the Year award. Skills learnt on her apprenticeship not only contributed to her job with the Institute but also helped propel her forward to the next stage in her career as the marketing analytics and insights manager at Google DeepMind. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/apprenticeships-boosting-careers-and-benefitting-employers/ |
| Description | As the NHS turns 75, and Genomics England 10, a data driven golden age for health is possible |
| 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 | Blog post following tenth anniversary of Genomics England. Setup to deliver the 100,000 Genomes Project, it provided evidence to justify use of whole genome sequencing for individual care and now delivers this component of NHS England's integrated Genomic Medicine Service. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/as-the-nhs-turns-75-and-genomics-england-10-a-data-driven-golden-age-fo... |
| Description | Association of Physicians of Great Britain and Ireland Event 20 April 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | BHF Data Science Centre Cambridge Evening Reception |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Informal evening reception to find out how BHF DSC are enabling data-led research to improve heart and circulatory health. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/684994907207?aff=oddtdtcreator |
| Description | BMJ Research Forum December 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 | Cathie Sudlow Attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | British Science Association 'For Thought' summit (4 person panel - talk & Q&A) - |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow member of discussion panel |
| Year(s) Of Engagement Activity | 2023 |
| Description | Cancer Data Driven Detection Workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | David Seymour (Director of Infrastructure & Services, HDR UK) was an invited speaker at the first Cancer Data Driven Detection Workshop, where he gave a presentation on the research data infrastucture landscape. This workshops intention was for this initiative to convene the leading experts from across the United Kingdom in cancer risk, epidemiology, multi-omics, early detection, prevention, health informatics and data science and showcase the breadth of expertise in the research community and scope available data sets/methodologies/infrastructure. The development of this programme will be over a one-year build phase. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.earlycancer.cam.ac.uk/events/cancer-data-driven-detection-cd3-workshop |
| Description | Celebrating impact from our Health Data Research Hubs |
| 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 | Looking back to see how the Digital Innovation Hubs programme has evolved since set up in 2019, and how they're enabling impactful research in a safe and secure way. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/celebrating-impact-from-our-health-data-research-hubs/ |
| Description | Celebrating women in health data research - International Day of Women and Girls in Science 2023 |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | This International Day of Women and Girls in Science, we're sharing the career stories of women in health data science and encouraging people on social media to celebrate their role models. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/celebrating-women-in-health-data-research-idwgs-2023/ |
| Description | Continuing my Uncle Clem's mission - the NHS 75 years on |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Member of HDR UK staff shares how her family ties to the beginning of the NHS sparked her passion for health data research and why it's important for the nation's healthcare. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/continuing-my-uncle-clems-mission-the-nhs-75-years-on/ |
| Description | Data Access through an NHS Research Secure Data Environment Network Workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | David Seymour (Director of Infrastructure & Services, HDR UK) was an invited speaker at the Data Access through an NHS Research Secure Data Environment Network Workshop, where he gave a presentation on the Pan UK Data Governance steering group. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Data for R&D Autumn Conference (speaking slot 14:45) - "A new era in health data: mapping strengths and identifying opportunities for research". |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow Key note speech at 14:45 |
| Year(s) Of Engagement Activity | 2023 |
| Description | Data for Research and Development: Autumn 2023 Update |
| 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 | David Seymour (Director of Infrastructure & Services, HDR UK) was a participant at the Data for Research and Development: Autumn 2023 Update, where the latest progress, next steps and how attendees can get involved were discussed. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/data-for-research-and-development-autumn-2023-update-tickets-68071891... |
| Description | Datamind Data Science meeting, Deutsche Bank, London |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Cathie Sudlow speaker slot in afternoon |
| Year(s) Of Engagement Activity | 2023 |
| Description | Diversity in Data - Ethnicity coding working group - May 23 |
| 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 | This working group is convened by the UK Health Data Research Alliance with the aim to bring together communities to address concerns around use of ethnicity data. The interactive discussions at this last in person event, combined with insights from previous online sessions, have demonstrated a broad interest in improving collection of data on ethnicity, as well as other personal demographic information. Most participants recognised that high quality data collection can benefit people through data-driven research, innovation, and policy decisions. But improvements and action from key decision makers across the four nations of the UK are needed. The UK Health Data Research Alliance can offer a forum to bring forward the discussion and drive adoption of best practice. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/projects/diversity-in-data/ |
| Description | ELIXIR Bioinformatics Industry Forum: Trusted research environments for sharing data in life sciences |
| 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 | A forum to bring together bioinformaticians, industry and business to discuss interoperability, technology and tools to enable analytical research across sectors. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://elixir-europe.org/events/elixir-bioinformatics-industry-forum-2023 |
| Description | Early Detection of Cancer Conference, Central Hall, Westminster October 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 | Cathie Sudlow attended conference for 3 days |
| Year(s) Of Engagement Activity | 2023 |
| Description | Enabling GP Data for Research and Patient Outcomes Workshop |
| 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 | David Seymour (Director of Infrastructure & Services, HDR UK) was a participate in a workshop on enabling use of GP data for research and patient outcomes. This workshop was an opportunity to address one of the Secretary of State's priorities by bringing together some of the best minds in this area. The workshop intends to get as much information as possible on the impact and potential barriers to enabling GP data use, from relevant experts. Specifically, in this workshop, the focus was on any legal/technical/IG considerations to using GP data for research, various methods for using the data in a safe and confidential manner; their merits and limitations and any concerns and mitigations about GP data becoming more accessible. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Gender inequality and bias persists in European cancer research, new study suggests |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Study led by Professor Mark Lawler, co-lead of HDR UK's Big Data for Complex Disease programme, found that senior female academics working in cancer research continue to face gender inequality. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/gender-inequality-and-bias-persists-in-european-cancer-research-new-stu... |
| Description | Global Alliance for Genomics and Health networking drinks reception |
| 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 | Andrew Morris attended. GA4GH are a strategic partner with HDRUK and collaborating on work prrogrammes within the Technology Ecosystem Pillar in QQ2 |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Community Meeting - Birmingham, 9th Nov 2022 |
| 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 | Bringing together people in the region through community meetings to enable collaboration and sharing of progress |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/387548135907?aff=oddtdtcreator |
| Description | HDR UK Leadership and Strategy Retreats |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Supporters |
| Results and Impact | Two-day HDR UK Leadership and Strategy Retreat |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/594840222117?aff=oddtdtcreator |
| Description | HDR UK Midlands Insight Sharing Day: Data Diversity and Health Inequalities in Data |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presented the work of the Alliance around ethnicity data standards and data collection. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdrmidlands.org.uk/hdrevents/health-inequalities-and-diversity-in-health-data-science-18... |
| Description | Health Data Research UK responds to DHSC Data access policy consultation |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Supporters |
| Results and Impact | The Department for Health and Social Care (DHSC) published their draft Data access policy update in May 2023, opening a period of consultation (now closed) to gather feedback to inform the final version and longer-term priorities and actions for data access policy. In preparing our response to the consultation we gathered a wider range of views from across the health data science community and brought these together in our formal submission. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/health-data-research-uk-responds-to-dhsc-data-access-policy-consultatio... |
| Description | Health Data Research UK's response on NHS data platform announcement |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Professor Andrew Morris, Director of HDR UK, responds to an announcement from NHS England on a new Federated Data Platform (FDP). Public response to the FDP announcement could have an impact on HDR UK's work if people opt out of use of data for research (which would not stop FDP utilisation) therefore we released statement to bring awareness to this. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/health-data-research-uks-response-on-nhs-data-platform-announcement/ |
| Description | House of Lords Event |
| 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 | VIP Event for celebrating 5 yrs of HDR UK. |
| Year(s) Of Engagement Activity | 2023 |
| Description | How CPRD is driving more equitable research |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | The Clinical Practice Research Datalink is a world-leading research resource that has been empowering researchers with data-driven insights for more than 30 years. Its new Ethnicity Records are a step closer to more inclusive public health research and clinical practice. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/how-cprd-is-driving-more-equitable-research/ |
| Description | Improving Access to Linked Data for Research workshop - April 23 |
| 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 | The UK Health Data Research Alliance (the Alliance) recently organised a series of working group sessions to address the challenges and opportunities associated with utilising linked data for health research in the UK. These sessions aimed to improve accessibility to linked data, streamline data access processes, and enhance collaborations among stakeholders in the UK health data ecosystem. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/06/UK-Health-Data-Research-Alliance-Improving-Acces... |
| Description | Innovation through collaboration: Standout moments from the Digital Innovation Hub Programme 2018-2023 |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Personal reflections from two key contributors to the delivery and success of the pioneering Digital Innovation Hub programme. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/innovation-through-collaboration-standout-moments-from-the-digital-inno... |
| Description | Introduction to the Stroke Data Science Catalyst |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Webinar to hear about our Stroke Catalyst's aims, insights and an update on our open funding call. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/794124185817?aff=oddtdtcreator |
| Description | Learnings from ICODA initiative highlight importance of data science in addressing COVID-19 research challenges |
| 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 | The International COVID-19 Data Alliance (ICODA) research studies made a significant contribution to the global pandemic response, harnessing the power of health data research approaches to address major research questions. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/learnings-from-icoda-partnership-reveal-importance-of-continued-transpa... |
| Description | Lifebit webinar - Data Harmony: Standardising Data to Enable Life-saving Research |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Panel about international data standards, common data models and interoperability across systems |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.lifebit.ai/blog/data-harmony-webinar-report |
| Description | NHS Research SDE Network agrees to adopt common data model |
| 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 | Dr Chris Russell, Head of Delivery, Data for Research and Development at NHS England, discusses how adoption of a common data model can help our complex healthcare system |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/nhs-research-sde-network-agrees-to-adopt-common-data-model/ |
| Description | NHS Research SDE Network launch event |
| 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 | David Seymour (Director of Infrastructure & Services, HDR UK) was a participant at the NHS Research SDE Network launch event. The event was a mix of plenary, networking, SRO Board, and workshops. |
| Year(s) Of Engagement Activity | 2023 |
| Description | NHS Research Secure Data Environment (SDE) Network Residential |
| 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 | David Seymour (Director of Infrastructure & Services, HDR UK) was a participant at the three day NHS Research Secure Data Environment (SDE) Network Residential event from 11th - 13th December 2023. |
| Year(s) Of Engagement Activity | 2023 |
| Description | NHS data: 'Maximising its impact for all' launch event |
| 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 | David Seymour (Director of Infrastructure & Services, HDR UK) attended the launch event, NHS Data: Maximising its impact for all on 20th April. The events was to identify strategic and technical recommendations to move towards developing a health data policy ecosystem that is designed so that value, either clinical, societal or financial, is more readily extracted from patient data. |
| Year(s) Of Engagement Activity | 2023 |
| Description | NIHR Digital Health Collaboration kick-off meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | David Seymour (Director of Infrastructure & Services, HDR UK) was an invited speaker at the National Institute for Health and Care Research (NIHR) Digital Health Collaboration kick-off meeting, where he gave a joint presentation with NHSE on the Secure Data Environment landscape to representatives from all NIHR Biomedical Research Centres. |
| Year(s) Of Engagement Activity | 2023 |
| Description | New UK-wide platform for uniting health data in traumatic brain injury research |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | The TBI-REPORTER research platform, led by the University of Cambridge in collaboration with HDR UK, launched to boost the use of data to advance treatment and care for people with traumatic brain injury. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/new-uk-wide-platform-to-unite-health-data-in-traumatic-brain-injury-res... |
| Description | New collaboration tackling dementia research challenges through health data and AI |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | NEURii launched by HDR UK, the University of Edinburgh, LifeArc, Eisai and Gates Ventures to translate healthcare data and digital sciences into projects that will transform care for people living with dementia, beiginning with a two-year pilot period. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/new-collaboration-tackling-dementia-research-challenges-through-health-... |
| Description | PRSB 10th Anniversary Celebration and AGM |
| 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 | Conference to celebrate achievements of the PRSB first 10 years and priorities for future work |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://theprsb.org/news/10-years-of-driving-better-health-and-care-outcomes-with-information-standa... |
| Description | Patient benefits are always our 'North Star' |
| 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 | The first HDR UK and University of Birmingham Immersion Week was all about working with real-world data and is being delivered by PIONEER, the Health Data Research Hub for Acute Care. One of the speakers for the week, Suzy Gallier, who is PIONEER's Technical and Deputy Director, discussed the course, and careers in health data science on HDR UK's blog. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/patient-benefits-are-always-our-north-star/ |
| Description | Professor Andrew Morris presented with Royal Medal from the Royal Society of Edinburgh |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Announcement of Professor Andrew Morris, Director of Health Data Research UK (HDR UK), being presented with a medal from the Royal Society of Edinburgh (RSE) for outstanding contributions to scientific research. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/professor-andrew-morris-presented-with-royal-medal-from-the-royal-socie... |
| Description | Professor Steffen Petersen appointed as BHF Data Science Centre Deputy Director |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Supporters |
| Results and Impact | Leading cardiologist Steffen Petersen has been named inaugural Deputy Director of the British Heart Foundation Data Science Centre, where he will support Cathie Sudlow in spearheading data-led science to improve heart health. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/professor-steffen-petersen-appointed-as-bhf-data-science-centre-deputy-... |
| Description | QResearch - high-quality data for world-leading research |
| 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 | Explanation for QResearch, a not-for-profit collaboration between healthcare technology provider Egton Medical Information Systems (EMIS) and the University of Oxford (it was originally with the University of Nottingham). |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/qresearch-high-quality-data-for-world-leading-research/ |
| Description | Redesigning Research Assessment |
| 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 | The recent release of the highly anticipated initial decisions by the Future Research Assessment Programme unveils the suggested structure of the forthcoming Research Excellence Framework (REF) in 2028. HDR UK Head of Open Science, Research Culture and Impact, wrote a blog post to discuss the important developments and what they mean to HDR UK. This piece has been used in further comms around research culture and the material will be referenced in content relating to HDR UK Impact Assessment. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/redesigning-research-assessment/ |
| Description | Research Centre/Portfolio Planning and Implementation Webinar |
| 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 | One-hour webinar delivered by HDR UK International Advisory Board member that focused on adapting selected project management tools so they can be applied to research centers and portfolios |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/691529311787?aff=oddtdtcreator |
| Description | TechXBio event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Conference and panel discussion on data standards and interoperability of systems for data and data access challenges for industry. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.bioindustry.org/event-listing/techbio-x-north-west.html |
| Description | The Health Foundation & Ada Lovelace Institute: Tackling health and social inequalities in data-driven systems |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Panel discussion about data-driven health systems and how technology can help tackle health inequalities. Shared work of the Alliance around ethnicity data standards and data collection. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/tackling-health-and-social-inequalities-in-data-driven-systems-ticket... |
| Description | The Scottish National Safe Haven - a secure research environment for health data research |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | The Scottish National Safe Haven (NSH) is part of the UK's growing TRE network and provides researchers with a high-powered computing service, secure analytic environment, secure file transfer and a range of analytic software.We asked Carole Morris, Head of Data and Modelling Services at Public Health Scotland to tell us more about the Scottish NSH and its importance in advancing health data research. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/the-scottish-national-safe-haven-a-secure-research-environment-for-heal... |
| Description | The unsung heroes of data science - defining standards and best practice |
| 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 | Professor Michelle Williams recently collaborated on a new British Standards Institution framework focused on artificial intelligence (AI). This blog post from the BHF Data Science Centre covers how such frameworks and guidelines are vital to good quality research in hot topic areas like AI for the research community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://bhfdatasciencecentre.org/news-and-events/the-unsung-heroes-of-data-science-defining-standard... |
| Description | Tim Hubbard announced as the next Director of ELIXIR |
| 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 | Professor Tim Hubbard, Associate Director of the London region of Health Data Research UK (HDR UK), was announced as the next Director of ELIXIR - a distributed European research infrastructure for life-science data |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/tim-hubbard-announced-as-the-next-director-of-elixir/ |
| Description | Transforming randomised clinical trials with healthcare data: Experts respond to the Lord O'Shaughnessy review |
| 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 | Following the publication of the Lord O'Shaughnessy review on the UK's commercial clinical trials landscape, Professors Marion Mafham and Matt Sydes discussed the potential of healthcare systems data to transform clinical trials in the UK - and the changes needed to achieve this. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/transforming-randomised-clinical-trials-response-to-lord-oshaughnessy-r... |
| Description | UK Health Data Research Alliance Council meeting - April 23 |
| 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 | Senior leaders from partner organisations join the Alliance Council to provide oversight and direction of the Alliance |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/05/20230428-Alliance-Council-Meeting-Actions-and-me... |
| Description | UK Health Data Research Alliance Council meeting - July 23 |
| 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 | Senior leaders from partner organisations join the Alliance Council to provide oversight and direction of the Alliance |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/07/20230713-Alliance-Council-Meeting-Actions-and-me... |
| Description | UK Health Data Research Alliance Council meeting - October 23 |
| 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 | Senior leaders from partner organisations join the Alliance Council to provide oversight and direction of the Alliance |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/11/20231010-Alliance-Council-Meeting-Actions-and-Me... |
| Description | UK Health Data Research Alliance Executive Committee - Introductory Meeting |
| 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 | The Alliance Executive Committee's purpose is to provide strategic leadership of the Alliance and to ensure its activities are in alignment with strategies across all areas of the health data ecosystem, as well as major infrastructure investments outside of, but relevant to, health and social care. It is responsible to the Alliance membership, represented through the Alliance Council. Its remit is: Guiding principles and growth, Programme development and prioritisation, Fostering collaboration, Communication and Engagement. The Alliance Executive Committee meet on a quarterly basis. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK Health Data Research Alliance Executive Committee - Sep 23 |
| 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 | The Alliance Executive Committee's purpose is to provide strategic leadership of the Alliance and to ensure its activities are in alignment with strategies across all areas of the health data ecosystem, as well as major infrastructure investments outside of, but relevant to, health and social care. It is responsible to the Alliance membership, represented through the Alliance Council. Its remit is: Guiding principles and growth, Programme development and prioritisation, Fostering collaboration, Communication and Engagement. The Alliance Executive Committee meet on a quarterly basis. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK Health Data Research Alliance Executive Committee Meeting - Dec 23 |
| 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 | The Alliance Executive Committee's purpose is to provide strategic leadership of the Alliance and to ensure its activities are in alignment with strategies across all areas of the health data ecosystem, as well as major infrastructure investments outside of, but relevant to, health and social care. It is responsible to the Alliance membership, represented through the Alliance Council. Its remit is: Guiding principles and growth, Programme development and prioritisation, Fostering collaboration, Communication and Engagement. The Alliance Executive Committee meet on a quarterly basis. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK Health Data Research Alliance calls for action to improve coding of ethnicity data |
| 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 | In 2021, the UK Health Data Research Alliance established the Ethnicity Coding Working Group to tackle the challenges and explore opportunities in the use of data reporting ethnicity. In this opinion piece the Head of Alliance Strategy and Engagement discusses the progress that has been made over the last two years and the future for the group |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/uk-health-data-research-alliance-calls-for-action-to-improve-coding-of-... |
| Description | UK Health Data Research Alliance welcomes patient and public groups to its membership |
| 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 | Announcement that demonstrates that UK Health Data Research Alliance continues to expand and diversify by welcoming seven new members and for the first time, two patient and public representative bodies. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/uk-health-data-research-alliance-welcomes-patient-and-public-groups-to-... |
| Description | UK health data landscape review commissioned |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Professor Cathie Sudlow OBE, Chief Scientist at HDR UK, commissioned to conduct an independent review mapping the UK's health-relevant data landscape, identifying barriers and reccommending solutions. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Verily and HDR UK -meeting to discuss partnership working |
| 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 | Andrew Morris attended |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://verily.com/ |
| Description | Webinar: Ethnic Minority Research Inclusion (EMRI) |
| 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 | Presented the work of the Alliance on enabling representative research through better collection of ethnicity data. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Webinars: Using Docker for Reproducible Health Data Research |
| 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 | Webinar series exploring the use of containers (Docker) for reproducibly interrogating multiple biobanks and other data enclaves. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/740697775987?aff=oddtdtcreator |
| Description | techUK roundtable on OMOP |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | David Seymour (Director of Infrastructure & Services, HDR UK) was an invited speaker at the tech UK & HDR UK OMOP Roundtable. The aim of this roundtable was to explore the use of Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) for Secure Data Environments. More specifically, the challenges and progress with the adoption of OMOP thus far, current challenges enabling large scale research, how to ease the adoption of OMOP going forward and encourage use across Secure Data Environments (SDEs), how to get the right incentives in place and the role of system suppliers in transformation of data to OMOP at source. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.techuk.org/what-we-deliver/events/techuk-hdr-uk-omop-roundtable.html |
| Description | use MY data education session |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Introduction to the Alliance network and invitation to collaborate |
| Year(s) Of Engagement Activity | 2023 |
| Description | £650m for UK's life sciences sector may contribute to improved clinical trials |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | HDR UK welcomes the Chancellor of the Exchequer's pledge of £650 million for the UK's life sciences including £121 million to improve clinical trials to bring new medicines to patients faster. |
| Year(s) Of Engagement Activity | 2023 |