DATA-CAN - The Health Data Research Hub for Cancer
Lead Research Organisation:
University College London
Department Name: UNLISTED
Abstract
"Access to high-quality health data opens up new opportunities to improve cancer care. By working with patients across the UK to bring their data together and employ these data effectively but responsibly, we will help create new ways of preventing, diagnosing and treating cancer that are quicker, more costeffective and work better.
DATA-CAN, the National Cancer Digital Innovation Hub, will transform the collection and examination of high-quality cancer data across the UK. We will ensure all data are held securely and we will always involve patients in decisions about how their data might be used. We will make these data available for legitimate use by approved researchers and innovators, and support them by providing advice from specialists who deeply understand both the data and cancer causes/treatment.
DATA-CAN is supported by patients, clinicians, academic and industry-based researchers and innovators, and will involve cancer centres across the UK. We will help empower the NHS to use data and analytics to optimise care for patients, while supporting universities and companies who work with us to discover and develop new diagnostics/treatments.
DATA-CAN will deliver benefits for patients and healthcare professionals, improve the UK’s health, enhance innovation and create new investment in healthcare."
DATA-CAN, the National Cancer Digital Innovation Hub, will transform the collection and examination of high-quality cancer data across the UK. We will ensure all data are held securely and we will always involve patients in decisions about how their data might be used. We will make these data available for legitimate use by approved researchers and innovators, and support them by providing advice from specialists who deeply understand both the data and cancer causes/treatment.
DATA-CAN is supported by patients, clinicians, academic and industry-based researchers and innovators, and will involve cancer centres across the UK. We will help empower the NHS to use data and analytics to optimise care for patients, while supporting universities and companies who work with us to discover and develop new diagnostics/treatments.
DATA-CAN will deliver benefits for patients and healthcare professionals, improve the UK’s health, enhance innovation and create new investment in healthcare."
Technical Summary
"Purpose: To create a National Cancer Digital Innovation Hub (DATA-CAN), a sustainable social enterprise underpinned by collective digital/data science strengths across the UK. DATA-CAN will enhance collection, curation, access, analysis and interpretation of cancer data, while providing guidance, domain-specific expertise and technical support to clinicians, academics and commercial partners.
Data custodians
NHS: Teaching hospitals in London, Yorkshire, Wales, NI and Scotland
Academic/Clinical: HDR-UK centres in London, Wales/NI and Scotland, UCLP, UoL & Sheffield, QUB;
Local Health Clinical Record Exemplars (LHCREs): London, Yorkshire and Humber
Industry: IQVIA
Area of focus
Theme 1: Enable and expand UK-wide cancer datasets (Lead: HDR Wales-NI)
Theme 2: Provide high-quality real-world data to support health and care transformation (Lead: UCLP)
Theme 3: Use real-world data to support trial design and delivery (Lead: Yorkshire and Humber)
Supported by
Enabler 1: Patient and Public Involvement/Engagement
Enabler 2: A sustainable business model
Data provision: Initial data assets encompass disease-specific datasets (colorectal cancer, paediatric malignancy); linked datasets from primary, secondary, and tertiary care; and IQVIA’s ODN, providing real-time clinical analytics and clinical trial matching services. All have been selected as mature programmes with existing ethics approval in place, allowing immediate access.Further datasets have been identified and will be added to DATA-CAN over the next 18-36 months, including new datasets from two national LHCREs, new data types including digital pathology, imaging, and data made available by three national centres for doctoral training in healthcare. The ODN will expand to at least 20 NHS Trusts.
DATA-CAN Expert Data Services: DATA-CAN will offer:
Dataset optimisation: data custodians advice on data availability/suitability for research, data curation and linkage, data enrichment
Protocolised research solutions: users support on dataset selection, access, study design and data curation
Care insights: real-world data and access to analytic services e.g. cost effectiveness analysis, benchmarking, needs analysis; actionable insight and quality improvement tools to patients/clinicians
Trial design and delivery: trial feasibility assessment, synthetic control-arm data and real-time patient identification
Additionally, in collaboration with industry partners, we will offer data custodians consultancy services on information governance, data security, access negotiation, and fair value exchange and commercial models.
Patient Oversight: Patient oversight is a key DATA-CAN governing principle. We commit to Use MY Data’s principles concerning: openness, transparency, involvement, communication and recognition of the data source (the Patient Data Citation)."
Data custodians
NHS: Teaching hospitals in London, Yorkshire, Wales, NI and Scotland
Academic/Clinical: HDR-UK centres in London, Wales/NI and Scotland, UCLP, UoL & Sheffield, QUB;
Local Health Clinical Record Exemplars (LHCREs): London, Yorkshire and Humber
Industry: IQVIA
Area of focus
Theme 1: Enable and expand UK-wide cancer datasets (Lead: HDR Wales-NI)
Theme 2: Provide high-quality real-world data to support health and care transformation (Lead: UCLP)
Theme 3: Use real-world data to support trial design and delivery (Lead: Yorkshire and Humber)
Supported by
Enabler 1: Patient and Public Involvement/Engagement
Enabler 2: A sustainable business model
Data provision: Initial data assets encompass disease-specific datasets (colorectal cancer, paediatric malignancy); linked datasets from primary, secondary, and tertiary care; and IQVIA’s ODN, providing real-time clinical analytics and clinical trial matching services. All have been selected as mature programmes with existing ethics approval in place, allowing immediate access.Further datasets have been identified and will be added to DATA-CAN over the next 18-36 months, including new datasets from two national LHCREs, new data types including digital pathology, imaging, and data made available by three national centres for doctoral training in healthcare. The ODN will expand to at least 20 NHS Trusts.
DATA-CAN Expert Data Services: DATA-CAN will offer:
Dataset optimisation: data custodians advice on data availability/suitability for research, data curation and linkage, data enrichment
Protocolised research solutions: users support on dataset selection, access, study design and data curation
Care insights: real-world data and access to analytic services e.g. cost effectiveness analysis, benchmarking, needs analysis; actionable insight and quality improvement tools to patients/clinicians
Trial design and delivery: trial feasibility assessment, synthetic control-arm data and real-time patient identification
Additionally, in collaboration with industry partners, we will offer data custodians consultancy services on information governance, data security, access negotiation, and fair value exchange and commercial models.
Patient Oversight: Patient oversight is a key DATA-CAN governing principle. We commit to Use MY Data’s principles concerning: openness, transparency, involvement, communication and recognition of the data source (the Patient Data Citation)."
Organisations
- University College London (Collaboration, Lead Research Organisation)
- UNIVERSITY OF EDINBURGH (Collaboration)
- LEEDS TEACHING HOSPITALS NHS TRUST (Collaboration)
- NHS Lothian (Collaboration)
- IQVIA (Collaboration)
- Genomics England (Collaboration)
- UNIVERSITY OF LEEDS (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- QUEEN'S UNIVERSITY BELFAST (Collaboration)
- UNIVERSITY OF EXETER (Collaboration)
Publications
Gordon B
(2021)
Development of a data utility framework to support effective health data curation.
in BMJ health & care informatics
K M A Ho
(2021)
Predicting endoscopic activity recovery in England after COVID-19: a national analysis
in Lancet Gastroenterol Hepatol
Lawler M
(2022)
Data must underpin our response to the covid-19 pandemic's disastrous impact on cancer.
in BMJ (Clinical research ed.)
Sud A
(2020)
Quantifying and Mitigating the Impact of the COVID-19 Pandemic on Outcomes in Colorectal Cancer
in SSRN Electronic Journal
Sud A
(2020)
Effect of delays in the 2-week-wait cancer referral pathway during the COVID-19 pandemic on cancer survival in the UK: a modelling study.
in The Lancet. Oncology
| Description | All Party Group on Cancer in the Irish parliament |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | DATA-CAN features in new report on Cancer Care in Ireland during COVID-19 pandemic |
| Geographic Reach | Europe |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.rcpi.ie/news/releases/rcpi-faculty-of-pathology-launches-new-report-on-cancer-care-durin... |
| Description | Evidence given for Clinical Research Coalition's Interim Report to Lord Bethell |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://publicpolicyprojects.com/newsdit-article/9f2e4a3d76c5762b44dbdcdd3ecf0d51/ |
| Description | Evidence to European Beating Cancer Committee |
| Geographic Reach | Europe |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Health and Social Care Select Committee inquiry on 'Delivering core NHS and care services during the pandemic and beyond' |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://publications.parliament.uk/pa/cm5801/cmselect/cmhealth/320/32006.htm#_idTextAnchor012 |
| Description | Maisie McKenzie, a member of the DATA-CAN patient and public involvement and engagement group, was asked by Dame Fiona Caldicott to join the National Data Guardian's panel of advisors. She is the first ever patient representative to join the NDG panel. |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | As the National Data Guardian, Dame Fiona Caldicott advised and challenged the health and care system to help ensure that citizens' confidential information is safeguarded securely and used properly in the English health and social care system. Last year, she decided to strengthen her panel of advisors by recruiting a patient and public voice representative. Following a competitive recruitment process, Maisie McKenzie was appointed as the first patient and public representative on the National Data Guardian panel. Maisie said, "This is an exciting opportunity for me to join the National Data Guardian panel as a patient and public voice. I look forward to bringing my experience as a carer and mental health first aider, as well as in the NHS and third sector, to this important role." |
| Description | PPIE members invited to join a workshop for the Goldacre Review Expert Patient & Public group |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://www.goldacrereview.org/ |
| Description | Research data from DATA-CAN quoted in report from the Institute of Public Policy Research (IPPR) and CF Healthcare Consulting |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.carnallfarrar.com/media/1570/200813-recovering-cancer-from-coviddocx.pdf |
| Description | Review work for Cancer Research UK to understand and evaluate their options for development of their UK Cancer Trusted Research Environment. |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | The Impact of COVID-19 on Cancer in Europe: 7-Point Plan to Address the Urgency and Build Back Better |
| Geographic Reach | Europe |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://www.europeancancer.org/component/attachments/?task=download&id=375 |
| Description | The study estimates that pre-COVID-19, about 31,354 newly diagnosed cancer patients would die within a year in England |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | Our research evidence was included in a letter to the Chief Medical Officers of all 4 UK nations highlighting the indirect impacts of COVID-19 on cancer patients and cancer services. Our estimates showed that pre-COVID-19, about 31,354 newly diagnosed cancer patients would die within a year in England. As a result of the emergency, there could be at least 6,270 additional deaths in newly diagnosed cancer patients alone. This number could rise to an estimated 17,915 additional deaths if all people currently living with cancer are considered. Our data was discussed in a parliamentary debate and front page headlines in both broadcast media and press. |
| URL | https://www.bbc.co.uk/programmes/m000kqzv |
| Description | COVID-19 impact modelling GRANT |
| Amount | £25,000 (GBP) |
| Organisation | Roche Products UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 08/2020 |
| End | 03/2021 |
| Description | Consultancy project on outcomes-based pricing in Scotland |
| Amount | £6,488 (GBP) |
| Organisation | AbbVie Inc |
| Sector | Private |
| Country | United States |
| Start | 06/2021 |
| End | 08/2021 |
| Description | Consultancy project providing expertise on commercial data access models in the UK |
| Amount | £39,000 (GBP) |
| Organisation | Association of the British Pharmaceutical Industry |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 07/2021 |
| End | 04/2022 |
| Description | DATA-CAN Individual Advisory Fees |
| Amount | £1,800 (GBP) |
| Organisation | Carnall Farrar Ltd |
| Sector | Private |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 01/2021 |
| Description | Feasibility gap analysis of UK data to validate existing and explore new surrogate endpoints for cancer |
| Amount | £142,350 (GBP) |
| Organisation | Janssen Research & Development |
| Sector | Private |
| Country | Global |
| Start | 06/2021 |
| End | 06/2022 |
| Description | Improving Patient Outcomes |
| Amount | £60,000 (GBP) |
| Organisation | Carnall Farrar Ltd |
| Sector | Private |
| Country | United Kingdom |
| Start | 08/2020 |
| End | 10/2021 |
| Description | MEGS Covid-19 Impact |
| Amount | £40,380 (GBP) |
| Organisation | Johnson & Johnson |
| Department | Janssen-Cilag |
| Sector | Private |
| Country | Global |
| Start | 08/2020 |
| End | 02/2021 |
| Description | [Confidential] |
| Amount | £21,618 (GBP) |
| Organisation | Flatiron Health |
| Sector | Private |
| Country | United States |
| Start | 07/2020 |
| End | 09/2020 |
| Description | [Confidential] |
| Amount | £2,193 (GBP) |
| Organisation | Flatiron Health |
| Sector | Private |
| Country | United States |
| Start | 07/2021 |
| End | 09/2021 |
| Title | Combined dataset for early triple negative breast cancer (eTNBC) |
| Description | The data came from cancer centres at Leeds Teaching Hospitals NHS Trust (Leeds) and NHS Lothian (Edinburgh). The Leeds cancer dataset comes from the cancer-specific electronic health record (EHR) captured on the Patient Pathway Manager platform, developed by DATA-CAN Clinical Lead Prof. Geoff Hall. It contains data from 3.1 million patients living in Leeds, from 72.1 million events and is linked to finance, Hospital Episode Statistics, cancer registration, the Cancer Outcomes and Services Dataset, and systemic anti-cancer therapy activity.The Edinburgh Cancer Centre serves 1.4m patients across four NHS Health Boards across the South East Scotland Region. It has maintained a clinical phenotyping, process, treatment and outcomes database for 40 years that integrates with regional electronic health systems and describes the complete cancer journey.The project required intensive data curation in Leeds, conversion of both datasets into a common data model, and combination and analysis of the data in a trusted research environment to protect patient privacy. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | No |
| Impact | The project involves a review of the treatments and outcomes of NHS patients with early-stage breast cancer that do not express the oestrogen, progesterone or HER2 receptors (early triple-negative breast cancer or eTNBC). This group of patients have fewer treatment options and worse outcomes compared to receptor positive breast cancer patients with a similar stage of disease. One of the DATA-CAN patient representatives reviewing the project has commented, "This is a vital piece of work, as patients know there is no very effective treatment for TNBC except older drugs. Consequently, this type of breast cancer is much feared." It is also important as it demonstrates our ability to complete a combined analysis of curated data from two NHS Cancer Centres spanning England and Scotland. |
| Title | National Cancer TRE |
| Description | NHS Digital's TRE service for England provides approved researchers with access to essential linked, de-identified health data to quickly answer COVID-19 related research questions. The TRE service provides researchers with support on data access requests, provision of data using the secure data platform the Data Processing Service (DPS) and help with analysis work. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | No |
| Impact | Approved research projects will help to guide national decision making and recommend potential interventions to reduce the severity of COVID-19 outcomes. NHSD are delivering the TRE service in partnership with HDRUK. The shared objective is to provide rapid, safe and trustworthy access to data in a transparent way that accelerates the pace of quality research. |
| URL | https://web.www.healthdatagateway.org/dataset/b5439bc5-8141-4a13-a024-a6db2003b40e |
| Title | Real Time Data Network (RTDN) |
| Description | This data set has been designed to support the aim to improve NHS cancer patient outcomes by sharing real-time data about UK cancer services during the COVID-19 pandemic and afterwards. This will be achieved by creating a network of UK-wide hospitals large and representative enough to allow national and local data analysis, enabling insights that are not possible from current national datasets. All hospitals share an agreed minimum dataset at minimum quality on a weekly basis (Level 1) with the option to share deeper datasets if that fits their digital maturity, patient choice, information governance and organisational priorities (Level 2 and 3). All data will be kept and shared under appropriate and agreed information governance and legal contracts, and via Trusted Research Environment(s). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The RTDN will Improve the speed of cancer data availability for service planning and development purposes and ultimately NHS cancer patient outcomes, by sharing real-time data about UK cancer services during the COVID-19 pandemic and afterwards. |
| URL | https://web.www.healthdatagateway.org/dataset/616c4488-65a5-4608-a187-0c6bc78b359a |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | Genomics England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | IQVIA |
| Country | United States |
| Sector | Private |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | Leeds Teaching Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | NHS Lothian |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | Queen's University Belfast |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | UCL Partners |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | University of Exeter |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Description | DATA-CAN - The Health Data Research Hub for Cancer |
| Organisation | University of Leeds |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | UCLPartners hosts DATA-CAN. UCLPartners is a leading academic health science partnership that harnesses research and innovation for better patient care and a healthier population. Working in partnership and at pace, its partners from the NHS and higher education support the healthcare system serving over six million people in parts of London, Hertfordshire, Bedfordshire and Essex. Its member universities and hospitals, which include Great Ormond Street Hospital, UCLH, Barts and the Royal Free, provide specialist cancer expertise, access to secure data environments, advanced data science capabilities and multiple specialist datasets and registries (including the One London whole systems integrated Care LHCRE). |
| Collaborator Contribution | Leeds Teaching Hospitals NHS Trust (LTHT) is one of the largest and busiest acute hospital trusts in the UK, hosts one of the UK's largest integrated cancer centres and sits at the heart of the West Yorkshire Cancer Alliance. LTHT has detailed data on more than 2.8 million patients including all urgent cancer referrals and diagnosis, treatment data on more than 450K patients with cancer. Data from these patients has been placed on the HDR-UK gateway including a cohort with linked primary and secondary/tertiary care data The Trust is also key member of the Yorkshire and Humber Local Health Care Record Exemplar and works, in close partnership with academic partners at the University of Leeds, towards the safe and secure sharing of health and care information to support clinical care, population health and research. The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the national Turing, Rosalind Franklin and Royce Institutes. The University is a research centre with experience in both data analytics and artificial intelligence via the Leeds Institute for Data Analytics. It hosts the Northern Pathology Imaging Co-operative (NPIC), Centre for Doctoral Training (CDT) for AI in Cancer Care, NIHR Surgical Medtech Co-operative, NIHR In Vitro Diagnostics Co-operative and HDR UK Data Science Masters Programme. Queen's University Belfast is a member of the Russell Group of the UK's leading research-intensive universities. The University is ranked in the top 200 in the world (Times Higher Education World University Rankings 2021) and is ranked 8th in the UK for Research Intensity (REF 2014/ Times Higher Education). The University has a significant cancer focus, through the Patrick G Johnston Centre for Cancer Research, the Northern Ireland Cancer Centre and the Northern Ireland Cancer Registry. It also hosts the Precision Medicine Centre of Excellence and Northern Ireland Biobank. Queen's also has significant expertise in data science and AI. It is the lead partner in two data driven, academia-industry partnerships - the Institute of Research Excellence for Advanced Clinical Healthcare (iREACH) and the Global Innovation Institute (GII). It is one of only seven substantive Health Data Research UK sites in the UK. Established in 2013, Genomics England was set up to deliver the flagship 100,000 Genomes Project, which in partnership with the NHS sequenced more than 100,000 whole genomes of rare disease and cancer participants and their families and paved the way for the establishment of the NHS Genomic Medicine Service. With a focus on multimodal data, Genomics England has a rich data set consisting of whole genome sequences linked to ever-expanding clinical and phenotypic data captured longitudinally across the participant's life-course. This data is made available to researchers across the globe through a secure Research Environment and has delivered successful collaborations through our active community of academic and clinical KOLs and industry partners. The recently released 78,000 genome aggregate file is one of the largest fully annotated sets of accessible genomes in the world. Genomics England has built a biobank of tumour, extracted DNA and additional multi-omics samples which are available for research projects, enabling technology comparisons and generating evidence for commissioning support. An advanced bioinformatics and interpretation pipeline enables analysis of rare and common variants and continued diagnostic discovery and clinical collaboration endeavours to return actionable findings to participants. As a founding partner of DATA-CAN, IQVIA is committed to: - Working in collaboration with NHS Trusts to develop the Cancer Data Network which delivers near real time information to those involved in the delivery of cancer services. The network uses data to drive improvements in the quality of care and increase treatment options for cancer patients. Healthcare organisations are able to understand how their cancer services are delivered and where improvements can potentially be made. The network also helps healthcare organisations identify patients who meet trial eligibility criteria in a faster and more efficient way, potentially leading to increased opportunities for patients to benefit from trial participation. - Ensuring non-identified data from the Cancer Data Network contributes towards a data repository that is made available to researchers. - Supporting the clinical research requirements of national and international pharmaceutical and biotech companies. - Offering advice and support to DATA-CAN regarding the commercial environment and services. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. The associate partnership between DATA-CAN, the University of Edinburgh and NHS Lothian will build on the early triple negative breast cancer data project with further data analysis work to benefit cancer patients. There has been a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School prior to them joining as a DATA-CAN associate partner. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. |
| Impact | This collaboration is multi-disciplinary, with partners from the NHS, academia and industry. We are improving access to cancer data for research by making it easier for researchers and others to discover and, where appropriate, access cancer data. To make health data more usable for research we are: - Extracting and bringing together data in secure research environments - Increasing data completeness and quality - Finding and supplying expert data scientists and services. We are also supporting the use of real-time cancer data by working together with industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products. We are aiding data discovery for researchers by providing data sets for the Health Data Research Innovation Gateway. We are working with the NHS, research institutes and charities to provide datasets that are discoverable through the Innovation Gateway. These datasets consist of site specific, population specific and whole pathway exemplars as well as novel data sources. We are supporting researchers and data users to agree access to data efficiently by supplying: - Information governance - Contract and commercial resources - Advice and frameworks We enable data to be used by bringing together and organising specific datasets to specific user needs, with the permission of the data controller - the organisation that controls the procedures and purpose of data use. We are performing data analysis to gain data intelligence on cancer relevant domains, such as the impact of COVID-19 on cancer. Patients are involved in DATA-CAN's decision-making process. Our Patient and Public Involvement and Engagement (PPIE) group helps ensure we act fairly and openly, in the best interests of patients. By working together, we are able to ensure that health data is used responsibly, and that the benefits of improved access to data for researchers are returned to the NHS and the wider UK community. Patients are active participants and leaders in all that we do. We ensure this by: - Having an engaged patient advocate group to represent our national ambition - Engaging with and representing the diverse cancer population of the UK - Engaging with existing patient advocacy champions - Recruiting patient and public participants in an open manner - Having a patient advocate/citizen lead on every DATA-CAN project We operate by the principles of transparency developed by use MY data, a movement of patients, carers and relatives which supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. Our patient and public members are proactively offered training to empower them in their role with DATA-CAN. |
| Start Year | 2019 |
| Title | DATA-CAN became a registered trademark of its host organisation UCLPartners |
| Description | DATA-CAN is a registered trademark of UCLPartners Limited |
| IP Reference | |
| Protection | Trade Mark |
| Year Protection Granted | 2020 |
| Licensed | No |
| Impact | Protection of the DATA-CAN brand name and its ability to sell and license the brand in future. |
| Description | Cabinet Office Open Innovation Series |
| 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 | Prof Lawler was invited to present to the Cabinet Office Innovation Series on COVID-19 providing the opportunity to highlight the impact of COVID-19 on cancer services and cancer patients and to emphasise the importance of being able to access and evaluate real time cancer data. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Cancer Cardiovascular Co-morbidities and Complications: the opportunities for action |
| 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 | Prof Lawler presented a session entitled 'Cancer and Cardiovascular Disease - Tackling the Two Big Cs through the use of data' |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://mepheartgroup.eu/cancer-cardiovascular-co-morbidities-and-complications-the-opportunities-fo... |
| Description | Cancer Care in the COVID-19 pandemic: What the data tells us and how best to move forward |
| 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 | Webinar examining the data around the cancer care that has been delivered in 2020 which is captured in a new report Cancer care in 2020 - The impact of the COVID-19 pandemic, compiled by the RCPI Faculty of Pathology, in partnership with the National Cancer Control Programme, the National Specialty Quality Improvement Programmes, the National Cancer Registry Ireland, DATA-CAN, the UK's Health Data Research Hub for Cancer, Queen's University Belfast, and the Northern Ireland Cancer Registry. The report is based on data provided by these sources and covers presentation, diagnosis and treatment of cancer in 2020. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://courses.rcpi.ie/product?catalog=Cancer-care-in-the-COVID-19-Pandemic |
| Description | Cancer Landscape in the Devolved Nations |
| 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 | Prof Lawler was invited to give the keynote address as part of this webinar on cancer in the devolved nations. He spoke on the activities of DATA-CAN across the UK and presented DATA-CAN's work on COVID-19 and Cancer. As a follow up to this webinar, Prof Lawler was contacted by the Swallows Head and Neck cancer charity, leading to a piece of work by DATA-CAN which highlighted the impact of COVID-19 and national lockdown on head and neck cancer. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Cancer cannot become the forgotten C in the fight against COVID-19 |
| 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 | DATA-CAN's Scientific Director, Prof Mark Lawler, reflects on the last year and the impact of the COVID-19 pandemic on cancer services and patients. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/cancer-cannot-become-the-forgotten-c-in-the-fight-against-covi... |
| Description | Cancer must not be the forgotten "C" in the fight against covid-19 |
| 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 | Blog by Prof Mark Lawler on the impact of Covid-19 on cancer services in the widely-read and highly respected BMJ Opinion site. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://blogs.bmj.com/bmj/2021/05/11/cancer-must-not-be-the-forgotten-c-in-the-fight-against-covid-1... |
| Description | CogX 2020: How do we ensure the voices of citizens are heard? |
| 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 | DATA-CAN PPIE Lead Chris Carrigan participated as a panelist on this virtual event which sought to tackle the knotty, real-life trade-offs of benefits and harms that emerging technologies bring to people and society. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://youtu.be/VLtNizx2ZiA |
| Description | DATA-CAN COVID-19 research features on BBC NI Spotlight programme |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Research and modelling from DATA-CAN: The UK's Health Data Research Hub for Cancer, featured on BBC Northern Ireland's Spotlight programme on Tuesday 20 October. Prof Mark Lawler, DATA-CAN's scientific lead and Professor of Digital Health at Queen's University Belfast, was interviewed for the programme, which looked at the impact of the COVID-19 pandemic on cancer services and patients in Northern Ireland. Sharing DATA-CAN's real time data which showed that, during lockdown, there has been a significant reduction in urgent referrals for potential cancer and a reduction in chemotherapy attendance, Prof Lawler told the programme that this could have a significant impact on five year survival rates for people with cancer. Professor Lawler said, "Health services and government's need to respond. There needs to be a significant increase in the number of cancer patients being diagnosed and treated. We can't just go back to the old normal. We estimate that we need to be working at 130 per cent of capacity to respond effectively." He added, "This is potentially a cancer epidemic. It isn't simply about overcoming COVID-19, It's also about overcoming the effects of the virus on the whole health system." |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.bbc.co.uk/iplayer/episode/m000nrtt/spotlight-20102020 |
| Description | DATA-CAN Impact Report |
| 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 | Our Impact Report showcases our two-year journey since our launch in late 2019. Find out more about our impact in improving access to data and, together with partners, unlocking the huge potential that data has to transform cancer care. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/impact-stories/data-can-impact-report/ |
| Description | DATA-CAN team feature in OneLondon video |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Members of the DATA-CAN team have featured in a video from OneLondon looking at how health data can support experience and outcomes for cancer patients. OneLondon is a partnership of NHS organisations and local government across London, working together with citizens to transform London's health and care services by joining up information to support fast, effective and safe care. The video features DATA-CAN Public and Patient Involvement and Engagement member Yvonne Adebola, Hub Director, Dr Charlie Davie and Hub Clinical Lead, Professor Kathy Pritchard-Jones. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.youtube.com/watch?v=ndKfKv29j48 |
| Description | DATA-CAN welcomes Swansea University as an associate partner |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The associate partnership formalises a long-standing and proactive working relationship between DATA-CAN and Population Data Science at Swansea University Medical School. The University brings significant data science capability and learning to the DATA-CAN family, including through the Secure Anonymised Information Linkage (SAIL) Databank - a Trusted Research Environment (TRE) containing billions of anonymised health, social and administrative records from the Welsh population. One of DATA-CAN's founding principles was that it should be a UK-wide partnership - drawing on the strengths of data research, and enabling access to health data, across all four nations. DATA-CAN now has formal partnership agreements with all four UK nations. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.data-can.org.uk/news-item/data-can-welcomes-swansea-university-as-an-associate-partner/ |
| Description | DATA-CAN welcomes the University of Edinburgh and NHS Lothian as associate partners |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | DATA-CAN is a UK-wide partnership which aims to improve care and outcomes for people with cancer by making high quality health data more accessible for cancer researchers and health professionals. The University of Edinburgh and NHS Lothian bring a wealth of cancer research, health outcomes and data analysis expertise through the Edinburgh Economics Unit, the Edinburgh Cancer Centre, CRUK Edinburgh Centre and affiliated investigators. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/data-can-welcomes-the-university-of-edinburgh-and-nhs-lothian-... |
| Description | DATA-CAN welcomes the University of Exeter as an associate partner |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | DATA-CAN: The Health Data Research Hub for Cancer is delighted to welcome the University of Exeter as a new associate partner. DATA-CAN is a UK-wide partnership which aims to improve care and outcomes for people with cancer by making high quality health data more accessible for cancer researchers and health professionals. Through its College of Medicine and Health, the University of Exeter brings a wealth of cancer research expertise, as well as data science knowledge and experience to the DATA-CAN partnership. Work from the Exeter team, which uses information from GP records to generate evidence to improve cancer diagnosis, has won the overall RCGP Research paper of the year twice, and been the cancer category winner several other times. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/data-can-welcomes-the-university-of-exeter-as-an-associate-par... |
| Description | DATA-CAN, the Northern Health Science Alliance and the Health Innovation Research Alliance Northern Ireland held a virtual seminar on health data research |
| 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 | DATA-CAN came together with the Northern Health Science Alliance (NHSA) and the Health Innovation Research Alliance Northern Ireland (HIRANI) in a virtual seminar to talk about the role of health data research in enhancing cancer research, improving patient outcomes and driving innovation. 'Health Data - the key driver to enhance cancer research and outcomes' on 29 June 2021, was a fascinating introduction to the work of Health Data Research UK across the whole country and the role of the health data research hubs, specifically DATA-CAN, the UK's Health Data Research Hub for Cancer. Bringing together partners in industry, life sciences, the NHS, data science, charities and academia, the event explored how inter-sectoral and cross-regional partnerships can drive an enhanced research and innovation agenda. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/health-data-the-key-driver-to-enhance-cancer-research-and-outc... |
| Description | Fairness: The importance of diversity in health data for creating better, fairer treatment for all |
| 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 | DATA-CAN PPIE representative Jacqui Gath shares her thoughts on the importance of data diversity in healthcare research and the steps that can be taken to address inequalities in healthcare. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/fairness-the-importance-of-diversity-in-health-data-for-creati... |
| Description | Fairness: a blog in honour of International Women's Day |
| 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 | DATA-CAN Patient and Public member, Jacqui Gath, blogs in a personal capacity this International Women's Day on women's health and data research. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.data-can.org.uk/news-item/fairness-a-blog-in-honour-of-international-womens-day/ |
| Description | GP data access - a cancer patient's view |
| 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 | Pete Wheatstone, Chair of DATA-CAN's PPIE group, blogs about the GP Data for Planning and Research (GPDPR) initiative. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/gp-data-access-a-cancer-patients-view/ |
| Description | HETT Reset (Healthcare Excellence Through Technology) |
| 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 | HETT Reset is an e-learning event designed to help healthcare professionals to overcome the biggest technology-related challenges after the rapid uptake of digital health services and healthtech. With a focus on the healthcare reset, culture and implementation, integration and interoperability, digital maturity and the digitally empowered patient, your team will end up inspired with many ideas to incorporate into active and future projects. HETT Reset is an e-learning event designed to help healthcare professionals to overcome the biggest technology-related challenges after the rapid uptake of digital health services and healthtech. With a focus on the healthcare reset, culture and implementation, integration and interoperability, digital maturity and the digitally empowered patient, your team will end up inspired with many ideas to incorporate into active and future projects. DATA-CAN's data lead, Monica Jones, and CCO/PPIE lead, Chris Carrigan, both spoke at HETT Reset. Monica joined the session on The Seismic Shifts in Management of Patient Data' and also recorded a HIMMS TV session on the effects of the Covid-19 pandemic on cancer patients and services. Chris Carrigan spoke on Establishing a Patient Centric Approach to Managing Data in his role as expert data advisor to Use MY Data. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://hettshow.co.uk/?hsLang=en |
| Description | HSJ Virtual Cancer 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 | James Peach, Commercial Director of DATA-CAN: The Health Data Research Hub for Cancer; Andi Orlowski, Director of the Health Economics Unit; and Deborah Lancaster, Head of Market Access Oncology at Novartis Pharmaceuticals UK, recently joined forces to present a data-focused session. The aim of the HSJ forum was to examine the impact of COVID-19 on national cancer care plans and explore how to work together to get back on track. The session on data analytics outlined how it can support a real-time response to a crisis as well as longer term cancer care planning. James Peach's presentation outlined the work of DATA-CAN in developing high-quality, connected health data that is accessible for cancer researchers, clinicians and other health professionals across the UK. DATA-CAN also works with patients, the public and health professionals to ensure that data is used transparently and responsibly. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://virtual-cancerseries.hsj.co.uk/ |
| Description | Health Data Research - 'All matters data and all data matters' virtual seminar with MedCity |
| 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 | MedCity works to support business to access the complex life sciences system. They help businesses find research expertise, investment and space - all the ingredients needed for the growth of the sector. Moderated by Neelam Patel, CEO of MedCity, they brought together three of the seven data hubs - Discover-NOW, DATA-CAN and INSIGHT - to introduce them and their work to innovators in industry. Almost 300 people registered for the event, which proved to be a fascinating insight into the work the hubs are doing. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://youtu.be/cZ7aHB6FUdE |
| Description | Impact of COVID-19 pandemic on cancer care features on BBC Panorama |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The research data, originally published as a preprint in April 2020, revealed that the COVID-19 pandemic in England could result in at least 20 per cent more deaths of over the next 12 months in people who have been newly diagnosed with cancer. The study estimated that pre-COVID-19, about 31,354 newly diagnosed cancer patients would die within a year in England. As a result of the COVID-19 emergency, there could be at least 6,270 additional deaths in newly diagnosed cancer patients alone. This number could rise to an estimated 17,915 additional deaths if all people currently living with cancer are considered. Prof Mark Lawler, Scientific Lead of DATA-CAN, and Professor Geoff Hall, Clinical Lead and Deputy Director of DATA-CAN, were both interviewed for the BBC Panorama programme. Professor Lawler told BBC Panorama, "Initial data that we got was very worrying to us. Anecdotally, people have been telling us there were problems, but I think the critical thing was being able to actually have routine data from hospital trusts. Obviously scientists like to be right in terms of their analysis, but I hope I'm wrong in relation to that." The researchers emphasised the importance of weekly national data on mortality and cancer services activity to be made available urgently, to enable better understanding of which disease combinations pose the greatest risk to life and inform how health services should be prioritised in order to give patients the best possible life chances. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Improving cancer patient outcomes through a national cancer Trusted Research Environment |
| 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 | As the Chief Data Officer for DATA-CAN - the health data research hub for cancer, Monica Jones' aim is to make high quality data more accessible for cancer researchers and health professionals in the NHS, universities and life science sector, to help them carry out essential research. A national cancer Trusted Research Environment is central to achieving this aim and this is why we are so pleased to be working with NHS Digital on the national cancer TRE. We know that COVID-19 has had a devasting impact on cancer services and patients, and one of our main roles over the last 18 months has been to lead the health data response to the crisis and help health services to mitigate against the worst effects. The national cancer TRE is opening up access to de-identified cancer data from across the whole of the United Kingdom to approved researchers from trusted organisations. The University of Leeds and Leeds NHS Teaching Hospitals Trust, are leading on this work on behalf of DATA-CAN which will enable important research on rates of cancer referrals, diagnoses and treatment. In the first phase, cancer data from the nationally collected NHS Hospital Episode Statistics (HES) and COVID-19 testing is being made available to approved researchers. Phase 2 will see national cancer datasets on outcomes, services, chemotherapy and radiotherapy being made available. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/improving-cancer-patient-outcomes-through-a-national-cancer-tr... |
| Description | Join DATA-CAN and Health Data Research UK for a virtual showcase on 25 May |
| 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 | Utilising real-life examples and case studies, this virtual showcase event will provide attendees with an understanding of DATA-CAN's work with partners in industry, the NHS and academia and opportunities to get involved. It will also focus on the many ways that the involvement of patients, carers and the public has made a genuine difference to the workings of the hub and its partners. The DATA-CAN virtual showcase is aimed at those interested in cancer data working in industry, the NHS and academia, as well as patients and the public that would like to learn more about how health data can make a difference to cancer care and services. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/join-data-can-and-health-data-research-uk-for-a-virtual-showca... |
| Description | Meet Anndior Boateng - DATA-CAN intern via the Black Interns initiative |
| 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 year, DATA-CAN had the privilege of welcoming two talented individuals as part of the Health Data Research UK black interns programme. In this blog our second intern Anndior Boateng, a third year nursing student, talks about the highlights of her time at DATA-CAN, the research she undertook and her plans for the future. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/meet-anndior-boateng-data-can-intern-via-the-black-interns-ini... |
| Description | Meet Noni Anigbo, DATA-CAN's first intern through the Black Interns Initiative |
| 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 summer, DATA-CAN was delighted to welcome Nonyelum (Noni) Anigbo, a pharmacy student at Keele University, as our first intern recruited as part of the 10,000 Black Interns initiative. As part of the programme, Health Data Research UK (HDR UK) brought together partners in data science, including DATA-CAN, to tackle the underrepresentation of Black people in the sector. The paid internships are providing young Black people with the opportunity to experience a range of careers in health data science. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/meet-noni-anigbo-data-cans-first-intern-through-the-black-inte... |
| Description | NHS Digital GP Dataset |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | DATA-CAN, the UK's Health Data Research Hub for Cancer has added its support to a joint statement from the Medical and Social Research Community on the use of health data for research. The statement, signed by 120 members of clinicians and health leaders, reads: GP health data are crucial for the planning and provision of health services and to enable research discoveries that save and improve people's lives. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/news/nhs-digital-gp-dataset-joint-statement-from-the-medical-and-social-rese... |
| Description | National Cancer Research Institute Cancer Conference - In conversation with ... Lynda Chin |
| 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 session, chaired by Prof Mark Lawler from Queen's University Belfast and DATA-CAN's Scientific Director, focused on the use of health data, analytics and technology to accelerate the translation of scientific advances in cancer research and to improve access to quality care for patients. Dr Lynda Chin, a world-renowned cancer genomic scientist, from the Dell Medical School at the University of Texas at Austin (USA), has made many scientific discoveries spanning mouse models of human cancers, cancer genomics, and personalised cancer medicine. She discussed how data, analytics and technologies enable not only precision in discovery research but also in care delivery, ushering in a new era of precision medicine. She also shared innovative models to narrow the disparity in access to care. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://conference.ncri.org.uk/events/in-conversation-with-lynda-chin/ |
| Description | Participation in Cancer Research UK's Cancer Data Driven Detection workshops |
| 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 | DATA-CAN attended two workshops to support Cancer Research UK's early diagnosis strategy for cancer |
| Year(s) Of Engagement Activity | 2022 |
| Description | Participation in Economist World Cancer Series |
| 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 | Prof Mark Lawler, DATA-CAN's Scientific Director, highlighted how the All-Ireland Cancer Consortium, established in 1991, is a unique partnership of representatives of Ireland, Northern Ireland and the United States. They worked together to reduce cancer incidence, enhance research and improve cancer care on the island of Ireland which, at the time, had some of the highest cancer rates in Europe. Mark explained how this transatlantic consortium has helped to save thousands of lives by increasing access to the latest treatments, participating in international clinical trials and building up both the quantity and quality of research collaborations. Chris Carrigan, DATA-CAN's Patient and Public Involvement and Engagement Lead and Chief Operating Officer, gave the UK perspective on patients and health data and explained that, from a patient perspective, there is a disconnect between the data that GPs hold and hospital data. Whilst there are local initiatives to connect data, including Local Health and Care Record projects, such as OneLondon and the Yorkshire and Humber Care Record, there is still a lot of work to do to connect health data across the UK. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://events.economist.com/world-cancer-series/ |
| Description | Presentation of Evidence to the European Beating Cancer Committee (BECA) of the European Parliament |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Prof Lawler, Scientific Lead of DATA-CAN was invited to present on COVID-19 and its impact on cancer services to the European Parliament's BECA committee, which takes evidence to underpin the design and implementation of Europe's Beating Cancer Plan. As part of his intervention, he presented on the DATA-CAN data and the European Cancer Organisation's 7 Point Plan to Build Back Better. Presenting evidence to BECA, which is the key committee in relation to cancer in the European Parliament provides the opportunity to influence the topics that will be considered in Europe's Beating Cancer Plan. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation to the Cancer Intergroup of the European Parliament |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Prof Lawler was invited to present on cancer inequalities in Europe to the Cancer Intergroup, a newly formed group in the European Parliament. As part of this presentation, Prof Lawler highlighted the impact of COVID-19 on cancer services and cancer patients and how it was widening the inequalities divide. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Presentation to the Northern Ireland Parliament All Party Group on Cancer |
| 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 | Prof Lawler, Scientific Lead of DATA-CAN was invited to present on COVID-19 and its impact on cancer services, with a particular focus on Northern Ireland to the Northern Ireland Parliament All Party Group on Cancer. Raising awareness of the impact of COVID-19 on cancer services and cancer patients in Northern Ireland. This has led to a number of parliamentary questions to the Health Minister |
| Year(s) Of Engagement Activity | 2020 |
| Description | Public Policy Projects (PPP) event: Challenges and opportunities for cancer in the post-COVID NHS |
| 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 | Prof Lawler spoke about DATA-CAN's research with the UCL Institute of Health Informatics which analysed near real-time data from NHS cancer centres to look at the effect of the Covid-19 emergency on cancer care. Mark told the event, "Real-time NHS data allows us to look at what's happening on the ground and start to develop solutions and learn from experience. As well as following the science, we also need to follow the data to be able to deliver the best possible care for our patients." The event was introduced by former health secretary Rt Hon Stephen Dorrell and chaired by former health minister Baroness Nicola Blackwood. NHS England's national cancer director, Dame Cally Palmer, also spoke at the event. PPP launched a white paper, in collaboration with IQVIA, at the event - Getting real: the potential that real-world evidence can realise for patients. https://integratedcarejournal.com/blog/publications/getting-real/ |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://youtu.be/8c2TjaRs0FQ |
| Description | Raconteur - The Covid effect: clearing the cancer backlog |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Prof Mark Lawler, DATA-CAN's Scientific Director, contributed to the article to describe the collaboration between University College London and DATA-CAN: The Health Data Research Hub for Cancer, which put the additional UK cancer death toll at as high as 18,000 over the next 12 months due to Covid-19. Data from DATA-CAN also shows that during the first wave of the pandemic in 2020, 70% of people with suspicious symptoms were not referred to specialist cancer services, while 40% of chemotherapy treatments were delayed. Prof Lawler noted that "this is a huge opportunity to reimagine cancer services and build back smarter using data with an innovative approach". Lawler, who is also co-chair of the European Cancer Organisation's Special Network on Covid-19 and Cancer, called for a pan-European approach to addressing the cancer backlog. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.raconteur.net/healthcare/cancer/the-covid-effect-clearing-the-cancer-backlog/ |
| Description | Ripples podcast: The importance of data for cancer patients |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Data is at the centre of so much of the discussion about COVID-19. Think of those daily press conferences from the government as well as newspaper reports and scholarly articles; our eyes are drawn to the statistics to explain the story of this pandemic. Our actions and health care are determined by what we take from the information so it's of particular significance to cancer patients. Join me for this 11th edition of Ripples and a great conversation involving Emily Kinloch, consumer lead for NCRI, Chris Carrigan, expert data advisor for Usemydata, and PPIE Lead of DATA-CAN; and James Peach, Commercial Director of DATA CAN. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://anchor.fm/clare-english/episodes/The-importance-of-data-for-cancer-patients-efnd8s |
| Description | Royal College of Physicians of Ireland Webinar: Delivering healthcare during a pandemic - adapting to a new normal to care for everyone |
| 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 | Prof Lawler, Scientific Lead of DATA-CAN presented "Standing up for Cancer in a COVID-focussed world: Follow the Science; Follow the Data highlighting the impact of COVID-19 on cancer services and cancer patients" raising awareness of this indirect impact of COVID. Apart from the significant awareness raising, this presentation prompted an invite to Prof Lawler to work with the RCPI and the Faculty of Pathology in determining the impact of COVID-19 on cancer specifically in Ireland, leading to a report "Deploying Data-Driven Intelligence to measure the impact of COVID-19 on cancer care and cancer patients" which has garnered a lot of national interest and was shared with the Department of Health. |
| Year(s) Of Engagement Activity | 2020 |
| Description | SNOMED International Expo 2020 |
| 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 | SNOMED International Expo 2020 was a virtual event that offers an opportunity to network with like-minded people and showcase the latest in digital health. A program of lectures and tutorial sessions will enable participants to learn about the global language of healthcare and its recent developments. It was attended by over 1,900 delegates from over 60 countries. DATA-CAN's Chief Data Officer, Monica Jones, addressed the conference in a session entitled, 'Sailing the high seas in a data ark' - the use of open standards to tackle the population health management challenge. Learning objectives included: • Help organisations to combine data and determine the value it can provide to enable better data driven decisions • Optimise pathways, processes, risk stratification, population segmentation, granular targeted intervention • Use of SNOMED CT and Open Standards to achieve excellence. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.snomed.org/news-and-events/events/snomedct-expo |
| Description | Time to Act: Urgent action needed as one million Cancer cases are undiagnosed in Europe due to COVID-19 |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | DATA-CAN's Scientific Director, Prof Mark Lawler, presents evidence of the disastrous impact of COVID-19 to Europe's Beating Cancer Plan Committee. Nearly one million Cancer cases in Europe are being missed due to COVID-19, according to new data published today by the European Cancer Organisation (E.C.O) Special Network on COVID-19 and Cancer, co-chaired by Prof Mark Lawler of Queen's University Belfast and DATA-CAN: the UK's Health Data Research Hub for Cancer. The findings, a stark reminder of the challenges facing cancer care services in Europe during the pandemic, coincide with the launch of Time To Act, E.C.O's Europe-wide campaign to urge the public, cancer patients, policymakers and healthcare professionals to ensure COVID-19 does not continue to undermine the fight against Cancer. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.europeancancer.org/TimeToAct |
| Description | Unlocking health data to improve oncology outcomes DATA-CAN & IQVIA webinar |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | This webinar will look at how oncology data can be used safely and appropriately to: - Drive more oncology research - Make informed decisions from drug research, drug discovery through to drug value - Encourage collaboration across healthcare stakeholders - payers, clinicians, researchers, industry, with the patient at the centre - Improve care and patient outcomes - Understand the impact of COVID-19 on cancer care and the potential implications on treatment pathways and patient outcomes |
| Year(s) Of Engagement Activity | 2020 |
| Description | Unlocking the power of data to improve cancer research |
| 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 | Monica Jones, Chief Data Officer of DATA-CAN, explains why we need good quality data that can be used well. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.data-can.org.uk/news-item/unlocking-the-power-of-data-to-improve-cancer-research/ |
| Description | Up to half a million endoscopy procedures delayed due to COVID-19 |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Research by University College London in partnership with DATA-CAN's scientific lead, Prof Mark Lawler, on the huge backlog in endoscopy services due to the COVID-19 pandemic has been published in the Lancet Gastroenterology and Heptology Journal and also features in the i newspaper. The study indicated that there is a potential backlog of half a million endoscopic procedures - which are used to diagnose gastrointestinal cancers including bowel (colorectal) cancers, the second most common cause of cancer death. Worryingly, this backlog is likely to persist for well over a year, even with the mitigation measures being proposed. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://inews.co.uk/news/health/cancer-deaths-uk-extra-covid-endoscopies-delayed-918204 |
| Description | Workshop to seek young people's views on cancer data |
| 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 | DATA-CAN, in partnership with the Children's Cancer and Leukaemia Group (CCLG), BRIGHTLIGHT and Candlelighters, is organising a workshop on 27 January to gather young people's thoughts on cancer patients' medical data. The aim is to gather the views of young people with cancer and to look at ways we can increase awareness about how data is used. We will also explore how we can make sure families feel confident that their data will be safe, while ensuring that researchers have the access to health data they need. DATA-CAN also tweeted a news story to invite people to join in the workshop. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.data-can.org.uk/news-item/workshop-to-seek-young-peoples-views-on-cancer-data/ |
| Description | World Cancer Series: Europe Virtual Week |
| 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 | Dr Charlie Davie joined the panel for the session From Bench to Bedside, which looked at how we can improve the links between academia, investment and health systems to improve the speed of innovation development and adoption to really benefit cancer patients. He was joined by Lars Holmgren of the Karolinska Institute in Sweden and Daniel Mahoney of Polar Capital. It was an opportunity to highlight DATA-CAN's work over the past year to improve the visibility and access to high quality cancer data and how this is a fundamental step to ultimately improve patient outcomes. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://events.economist.com/events-conferences/emea/world-cancer-series-europe/#overview |
| Description | World Health Organisation European Region annual meeting |
| 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 | Prof Lawler spoke about DATA-CAN's research on the effect of the pandemic on cancer care which found that there have been significant delays in referrals and treatment. He emphasised that, as countries collaborate in rebuilding health systems after the Covid-19 emergency, rebuilding cancer services must be an urgent priority. Mark said, "While we are seeing a positive recovery in cancer referrals and chemotherapy appointments, there have been significant diagnostic and treatment delays. Our data indicates that getting back to pre-Covid-19 levels is simply not enough. We need to be nearer 130 per cent of capacity to address the backlog and serve our citizens best. Data shows us where to prioritise our resources. So I exhort you - follow the science, follow the data. Covid-19 does not respect national borders." He also emphasised the importance of collecting near real-time data to enable health systems across Europe to respond to Covid-19, telling the WHO, "Real-time data is key. If your data is three months old, you are really trying to fight Covid-19 with one hand behind your back." |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://youtu.be/4luomP9puDc |