Big Data for Complex Disease
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
Big Data for Complex Disease focuses on bringing together different types of information about patients to better understand opportunities to improve health care through the prediction, diagnosis, treatment or even prevention of complex disease. The work will initially focus on cancer and cardiovascular disease (CVD) the complex diseases responsible for the majority of disease and death in the UK and globally (CVD includes a range of disease such as heart attacks, strokes and Arrhythmia).
This programme will use data from the whole UK population (60-65 million people), providing new tools and opportunities to understand how complex diseases effect each other and how peoples characteristics impact the chance of getting and outcomes of these diseases. This challenge will be an opportunity to bring experts in these different diseases types together and work as a team to improve patient care.
This programme will use data from the whole UK population (60-65 million people), providing new tools and opportunities to understand how complex diseases effect each other and how peoples characteristics impact the chance of getting and outcomes of these diseases. This challenge will be an opportunity to bring experts in these different diseases types together and work as a team to improve patient care.
Technical Summary
This work is funded by the UKRI Medical Research Council, UKRI Engineering and Physical Sciences Research Council, UKRI Economic and Social Research Council, Department of Health and Social Care, National Institute for Health Research (England), Chief Scientist Office (Scottish Government), Health and Care Research Wales, Public Health Agency HSC (Northern Ireland), British Heart Foundation and Cancer Research UK
For a wide range of complex diseases, deriving intelligence from nationwide, multisource, linked health relevant data has the potential to yield crucial insights that accelerate and enhance opportunities for innovation in disease detection, diagnosis, treatment, improved care, better outcomes and more rational health policy. Cancer and cardiovascular diseases (CVD) are the two commonest causes of morbidity and mortality in the UK and globally, with incidence, morbidity and mortality increasing over the last several decades as the world’s population has aged. Slowing these global trends requires approaches that recognise and exploit the power of whole, large population-scale health relevant data to catalyse health data science and its translation (The NHS Longterm Plan, August 2019; CVD-COVID-UK Project). We also need to break down traditionally siloed disease and expertise specific domains, rising to the challenge of jointly addressing cancer, CVD, other complex diseases, their inter-relationships and their sequelae. Crucially, we need to use the intelligence gained to translate into real benefit for citizens and patients and influence national and international policy and best practice.
Objectives
The Big Data for Complex Disease (BDCD) Driver Programme will address three core challenges that focus on deploying whole population, national linked health data:
1. To better predict development of cancer and CVD and to stratify risk for better early detection, early diagnosis and prevention.
2. To improve understanding of the inter-relationship between these complex diseases to ensure that data-driven insights fully inform strategies for the prevention, early diagnosis and management of both treatment sequelae and long-term risk.
3. To examine and better understand the impact of inequalities to influence and mitigate the negative impacts on incidence and outcomes associated with age, gender, ethnicity, geography and deprivation.
Impact and legacy
With an initial focus on cancer and CVD, but with clear potential through leverage to expand to other complex diseases, the Big Data for Complex Disease (BDCD) Driver Programme will address these challenges, bringing together expertise, data assets and research infrastructure from across the UK to create an enduring Data Foundation that will underpin research into these conditions and their interrelationships over the next decade and beyond.
For a wide range of complex diseases, deriving intelligence from nationwide, multisource, linked health relevant data has the potential to yield crucial insights that accelerate and enhance opportunities for innovation in disease detection, diagnosis, treatment, improved care, better outcomes and more rational health policy. Cancer and cardiovascular diseases (CVD) are the two commonest causes of morbidity and mortality in the UK and globally, with incidence, morbidity and mortality increasing over the last several decades as the world’s population has aged. Slowing these global trends requires approaches that recognise and exploit the power of whole, large population-scale health relevant data to catalyse health data science and its translation (The NHS Longterm Plan, August 2019; CVD-COVID-UK Project). We also need to break down traditionally siloed disease and expertise specific domains, rising to the challenge of jointly addressing cancer, CVD, other complex diseases, their inter-relationships and their sequelae. Crucially, we need to use the intelligence gained to translate into real benefit for citizens and patients and influence national and international policy and best practice.
Objectives
The Big Data for Complex Disease (BDCD) Driver Programme will address three core challenges that focus on deploying whole population, national linked health data:
1. To better predict development of cancer and CVD and to stratify risk for better early detection, early diagnosis and prevention.
2. To improve understanding of the inter-relationship between these complex diseases to ensure that data-driven insights fully inform strategies for the prevention, early diagnosis and management of both treatment sequelae and long-term risk.
3. To examine and better understand the impact of inequalities to influence and mitigate the negative impacts on incidence and outcomes associated with age, gender, ethnicity, geography and deprivation.
Impact and legacy
With an initial focus on cancer and CVD, but with clear potential through leverage to expand to other complex diseases, the Big Data for Complex Disease (BDCD) Driver Programme will address these challenges, bringing together expertise, data assets and research infrastructure from across the UK to create an enduring Data Foundation that will underpin research into these conditions and their interrelationships over the next decade and beyond.
Organisations
- Health Data Research UK (Lead Research Organisation)
- UNIVERSITY COLLEGE LONDON (Collaboration)
- University of Leeds (Collaboration)
- UNIVERSITY OF NOTTINGHAM (Collaboration)
- UNIVERSITY OF LEICESTER (Collaboration)
- UNIVERSITY OF BRISTOL (Collaboration)
- University of Oxford (Collaboration)
- HEALTH DATA RESEARCH UK (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
Publications
Zhong X
(2024)
Trends in incidence of pneumothorax in England before, during and after the COVID-19 pandemic (2017-2023): a population-based observational study.
in The Lancet regional health. Europe
Wilde H
(2025)
Trends in Pediatric Hospital Admissions Caused or Contributed by SARS-CoV-2 Infection in England.
in The Journal of pediatrics
Wei W
(2024)
Improving reporting standards for phenotyping algorithm in biomedical research: 5 fundamental dimensions
in Journal of the American Medical Informatics Association
Warren-Gash C
(2023)
Severe COVID-19 outcomes by cardiovascular risk profile in England in 2020: a population-based cohort study.
in The Lancet regional health. Europe
Ward ZJ
(2024)
Investing in cancer care in the UK: why aren't we acting on the evidence?
in The Lancet. Oncology
Walker VM
(2024)
COVID-19 and Mental Illnesses in Vaccinated and Unvaccinated People.
in JAMA psychiatry
Taylor JC
(2024)
Minimally Invasive Surgery for Colorectal Cancer: Benchmarking Uptake for a Regional Improvement Programme.
in Clinical colorectal cancer
Suseeladevi A
(2024)
COVID-19 vaccination and birth outcomes of 186,990 women vaccinated before pregnancy: an England-wide cohort study
in The Lancet Regional Health - Europe
| Description | Policy Review report on UK wide cancer policy published in The Lancet Oncology which will be launched today at an event in the UK Parliament. |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://www.qub.ac.uk/News/Allnews/2023/queens-expert-raises-alarm-majormisstep-uk-cancer-policy-new... |
| Title | Curated Data Assets within NHS England Secure Data Environment |
| Description | Datasets that have been cleaned, tidied, and formatted to enhance their usability. The primary goal of curating these data is to simplify subsequent data curation or analysis processes. Curating a data table could involve removing null records, standardising formats, and restructuring the data (e.g., pivoting tables into a long format). These steps would usually need to be performed on the data, regardless of the user's specific purpose. Note that the curated data asset is only available within the NHS England Secure Data Environment, but the information (metadata) about the assets and methodologies are publicly available. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | Supporting researchers as part of the CVD-COVID-UK/COVID-IMPACT consortium, including the Big Data for Complex Disease programme, to understand data assets available within the NHS England Secure Data Environment, as part of their research projects. |
| URL | https://bhfdsc.github.io/documentation/curated_data |
| Title | Dataset Insights within NHS England Secure Data Environment |
| Description | Repository of dataset insights to help understanding of the individual datasets provisioned in the CVD-COVID-UK/COVID-IMPACT instance of the NHS England Secure Data Environment (SDE), including their limitations and how they were compiled. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | Supported research projects within CVD-COVID-UK/COVID-IMPACT consortium, including Big Data for Complex Disease. All projects as part of this programme will make use of these resources. |
| URL | https://bhfdsc.github.io/documentation/docs/insights |
| Title | Dataset Summaries within NHS England Secure Data Environment |
| Description | Summarises the datasets provisioned in the CVD-COVID-UK/COVID-IMPACT instance of the NHS England Secure Data Environment (SDE), including start and end dates and update frequency and lag, as well as key notes and links to further information. Please see the Dataset Summary Dashboard for more information about the datasets, including descriptions, links, data dictionaries, overall counts, and data coverage and variable completeness plots, and the option to be able to compare data coverage across datasets |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | Dataset summaries help researchers plan their research projects within CVD-COVID-UK/COVID-IMPACT consortium, including the Big Data for Complex Disease programme. |
| URL | https://bhfdsc.github.io/documentation/docs/dataset_overview/dataset_summary_table |
| Title | Phenotype Library Collection |
| Description | Collection of disease phenotypes based on CVD-COVID-UK/COVID-IMPACT consortium research, including projects from Big Data for Complex Disease programme. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | Researchers can review definitions, including code lists, and add new phenotypes to the collection for access by the community. |
| URL | https://phenotypes.healthdatagateway.org/phenotypes/?collections=20 |
| Description | BDCD Fellows |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded five fellowships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Angela Wood (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | Nottingham - The proposed research focuses on improving the identification of individuals with familial hypercholesterolaemia (FH). Familial Hypercholesterolaemia (FH) is a common inherited cause of raised cholesterol since birth, affecting about 320,000 people in the UK. Unfortunately, over 80% of individuals with FH remain undiagnosed and untreated, leading to an estimated 140,000 avoidable heart attacks and premature deaths in the UK alone. However, the timely identification and use of cholesterol-lowering medication can significantly reduce the risk of developing heart disease and other serious health complications. Cambridge - This HDR UK Fellowship aims to find ways to prevent the onset of coronary heart disease and stroke among people with other long-term conditions. The problems are frequently caused by a build-up of fat in the blood vessels that supply oxygen to the heart (coronary heart disease) and brain (stroke) and this is why they are referred to as cardiovascular diseases. Some patients with coronary heart disease and stroke suffer from illnesses in other parts of the body such as the pancreas and kidneys ('non-cardiovascular diseases'). Researchers have already found links between some non-cardiovascular diseases (for example, diabetes) and either coronary heart disease or stroke. This means that people with these illnesses can be followed up, advised to change habits which can affect their health, or given medications to address both diseases. Cambridge - This fellowship focuses on the additional longer-term conditions that people with a new diagnosis of diabetes develop. The health journeys of people with diabetes compared to those without diabetes will be followed during the unique period of the COVID-19 era (2020-27) when lifestyles and access to health services changed dramatically. Using hospital and GP health records across the entire populations of England, Scotland and Wales (around 70 million people in total), this research will study the health consequences of having a new diagnosis of diabetes and for diverse population subgroups (by sex, age, ethnicity, socio-economic status and region). The results will inform guidelines on how people with diabetes can be best followed up in England, Scotland and Wales. University College London - Cancer and cardiovascular disease (CVD) are the two most common causes of mortality in the UK. Given the known health inequalities in prevention, treatment and outcomes of cancer and CVD in people with mental illness, it is important that research focusing on CVD and cancer includes mental health as a factor. It is desirable to identify patient groups less likely to access cancer or CVD screening, or more likely to suffer missed or late diagnoses. This project aims to draw on Electronic Health Records (EHRs) and other routinely collected data across the UK to quantify differences in cancer and CVD diagnosis rates and outcomes across mental health conditions, social determinants of health and other patient characteristics. It also aims to establish which patient characteristics lead to the co-occurrence of CVD, cancer and severe and complex mental illness (SCMI). Leeds - Heart failure (HF) is a condition consisting of symptoms (e.g. breathlessness, ankle swelling), clinical signs, and structural and/or functional abnormality of the heart. As many cases of HF are diagnosed each year in the NHS as the four most common causes of cancer combined, and HF has a worse prognosis than each of bladder, prostate and breast cancer. Heart failure is split into two types; where the heart is weak (heart failure with reduced ejection fraction) and where the heart does not relax enough to pump effectively (heart failure with preserved ejection fraction, HFpEF). HFpEF is becomingly increasingly common, and is forecast to become the most common type of HF. However, little is known about the scale of how many people have HFpEF in the UK, and how often HFpEF causes hospital admission or death after diagnosis. Also, many of these patients have delays to diagnosis, even after presenting to their GP with symptoms consistent with HFpEF. This Fellowship aims to use whole population, national linked health data to investigate how common HFpEF is, how people do after diagnosis, and whether inequalities affect this. It will also seek to develop a prediction model for HFpEF to help identify people with HFpEF earlier, in the primary care setting, so they can get the right treatment earlier. |
| Impact | Work ongoing |
| Start Year | 2024 |
| Description | BDCD Fellows |
| Organisation | University of Cambridge |
| Department | Cambridge Neuroscience |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded five fellowships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Angela Wood (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | Nottingham - The proposed research focuses on improving the identification of individuals with familial hypercholesterolaemia (FH). Familial Hypercholesterolaemia (FH) is a common inherited cause of raised cholesterol since birth, affecting about 320,000 people in the UK. Unfortunately, over 80% of individuals with FH remain undiagnosed and untreated, leading to an estimated 140,000 avoidable heart attacks and premature deaths in the UK alone. However, the timely identification and use of cholesterol-lowering medication can significantly reduce the risk of developing heart disease and other serious health complications. Cambridge - This HDR UK Fellowship aims to find ways to prevent the onset of coronary heart disease and stroke among people with other long-term conditions. The problems are frequently caused by a build-up of fat in the blood vessels that supply oxygen to the heart (coronary heart disease) and brain (stroke) and this is why they are referred to as cardiovascular diseases. Some patients with coronary heart disease and stroke suffer from illnesses in other parts of the body such as the pancreas and kidneys ('non-cardiovascular diseases'). Researchers have already found links between some non-cardiovascular diseases (for example, diabetes) and either coronary heart disease or stroke. This means that people with these illnesses can be followed up, advised to change habits which can affect their health, or given medications to address both diseases. Cambridge - This fellowship focuses on the additional longer-term conditions that people with a new diagnosis of diabetes develop. The health journeys of people with diabetes compared to those without diabetes will be followed during the unique period of the COVID-19 era (2020-27) when lifestyles and access to health services changed dramatically. Using hospital and GP health records across the entire populations of England, Scotland and Wales (around 70 million people in total), this research will study the health consequences of having a new diagnosis of diabetes and for diverse population subgroups (by sex, age, ethnicity, socio-economic status and region). The results will inform guidelines on how people with diabetes can be best followed up in England, Scotland and Wales. University College London - Cancer and cardiovascular disease (CVD) are the two most common causes of mortality in the UK. Given the known health inequalities in prevention, treatment and outcomes of cancer and CVD in people with mental illness, it is important that research focusing on CVD and cancer includes mental health as a factor. It is desirable to identify patient groups less likely to access cancer or CVD screening, or more likely to suffer missed or late diagnoses. This project aims to draw on Electronic Health Records (EHRs) and other routinely collected data across the UK to quantify differences in cancer and CVD diagnosis rates and outcomes across mental health conditions, social determinants of health and other patient characteristics. It also aims to establish which patient characteristics lead to the co-occurrence of CVD, cancer and severe and complex mental illness (SCMI). Leeds - Heart failure (HF) is a condition consisting of symptoms (e.g. breathlessness, ankle swelling), clinical signs, and structural and/or functional abnormality of the heart. As many cases of HF are diagnosed each year in the NHS as the four most common causes of cancer combined, and HF has a worse prognosis than each of bladder, prostate and breast cancer. Heart failure is split into two types; where the heart is weak (heart failure with reduced ejection fraction) and where the heart does not relax enough to pump effectively (heart failure with preserved ejection fraction, HFpEF). HFpEF is becomingly increasingly common, and is forecast to become the most common type of HF. However, little is known about the scale of how many people have HFpEF in the UK, and how often HFpEF causes hospital admission or death after diagnosis. Also, many of these patients have delays to diagnosis, even after presenting to their GP with symptoms consistent with HFpEF. This Fellowship aims to use whole population, national linked health data to investigate how common HFpEF is, how people do after diagnosis, and whether inequalities affect this. It will also seek to develop a prediction model for HFpEF to help identify people with HFpEF earlier, in the primary care setting, so they can get the right treatment earlier. |
| Impact | Work ongoing |
| Start Year | 2024 |
| Description | BDCD Fellows |
| Organisation | University of Leeds |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded five fellowships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Angela Wood (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | Nottingham - The proposed research focuses on improving the identification of individuals with familial hypercholesterolaemia (FH). Familial Hypercholesterolaemia (FH) is a common inherited cause of raised cholesterol since birth, affecting about 320,000 people in the UK. Unfortunately, over 80% of individuals with FH remain undiagnosed and untreated, leading to an estimated 140,000 avoidable heart attacks and premature deaths in the UK alone. However, the timely identification and use of cholesterol-lowering medication can significantly reduce the risk of developing heart disease and other serious health complications. Cambridge - This HDR UK Fellowship aims to find ways to prevent the onset of coronary heart disease and stroke among people with other long-term conditions. The problems are frequently caused by a build-up of fat in the blood vessels that supply oxygen to the heart (coronary heart disease) and brain (stroke) and this is why they are referred to as cardiovascular diseases. Some patients with coronary heart disease and stroke suffer from illnesses in other parts of the body such as the pancreas and kidneys ('non-cardiovascular diseases'). Researchers have already found links between some non-cardiovascular diseases (for example, diabetes) and either coronary heart disease or stroke. This means that people with these illnesses can be followed up, advised to change habits which can affect their health, or given medications to address both diseases. Cambridge - This fellowship focuses on the additional longer-term conditions that people with a new diagnosis of diabetes develop. The health journeys of people with diabetes compared to those without diabetes will be followed during the unique period of the COVID-19 era (2020-27) when lifestyles and access to health services changed dramatically. Using hospital and GP health records across the entire populations of England, Scotland and Wales (around 70 million people in total), this research will study the health consequences of having a new diagnosis of diabetes and for diverse population subgroups (by sex, age, ethnicity, socio-economic status and region). The results will inform guidelines on how people with diabetes can be best followed up in England, Scotland and Wales. University College London - Cancer and cardiovascular disease (CVD) are the two most common causes of mortality in the UK. Given the known health inequalities in prevention, treatment and outcomes of cancer and CVD in people with mental illness, it is important that research focusing on CVD and cancer includes mental health as a factor. It is desirable to identify patient groups less likely to access cancer or CVD screening, or more likely to suffer missed or late diagnoses. This project aims to draw on Electronic Health Records (EHRs) and other routinely collected data across the UK to quantify differences in cancer and CVD diagnosis rates and outcomes across mental health conditions, social determinants of health and other patient characteristics. It also aims to establish which patient characteristics lead to the co-occurrence of CVD, cancer and severe and complex mental illness (SCMI). Leeds - Heart failure (HF) is a condition consisting of symptoms (e.g. breathlessness, ankle swelling), clinical signs, and structural and/or functional abnormality of the heart. As many cases of HF are diagnosed each year in the NHS as the four most common causes of cancer combined, and HF has a worse prognosis than each of bladder, prostate and breast cancer. Heart failure is split into two types; where the heart is weak (heart failure with reduced ejection fraction) and where the heart does not relax enough to pump effectively (heart failure with preserved ejection fraction, HFpEF). HFpEF is becomingly increasingly common, and is forecast to become the most common type of HF. However, little is known about the scale of how many people have HFpEF in the UK, and how often HFpEF causes hospital admission or death after diagnosis. Also, many of these patients have delays to diagnosis, even after presenting to their GP with symptoms consistent with HFpEF. This Fellowship aims to use whole population, national linked health data to investigate how common HFpEF is, how people do after diagnosis, and whether inequalities affect this. It will also seek to develop a prediction model for HFpEF to help identify people with HFpEF earlier, in the primary care setting, so they can get the right treatment earlier. |
| Impact | Work ongoing |
| Start Year | 2024 |
| Description | BDCD Fellows |
| Organisation | University of Nottingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded five fellowships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Angela Wood (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | Nottingham - The proposed research focuses on improving the identification of individuals with familial hypercholesterolaemia (FH). Familial Hypercholesterolaemia (FH) is a common inherited cause of raised cholesterol since birth, affecting about 320,000 people in the UK. Unfortunately, over 80% of individuals with FH remain undiagnosed and untreated, leading to an estimated 140,000 avoidable heart attacks and premature deaths in the UK alone. However, the timely identification and use of cholesterol-lowering medication can significantly reduce the risk of developing heart disease and other serious health complications. Cambridge - This HDR UK Fellowship aims to find ways to prevent the onset of coronary heart disease and stroke among people with other long-term conditions. The problems are frequently caused by a build-up of fat in the blood vessels that supply oxygen to the heart (coronary heart disease) and brain (stroke) and this is why they are referred to as cardiovascular diseases. Some patients with coronary heart disease and stroke suffer from illnesses in other parts of the body such as the pancreas and kidneys ('non-cardiovascular diseases'). Researchers have already found links between some non-cardiovascular diseases (for example, diabetes) and either coronary heart disease or stroke. This means that people with these illnesses can be followed up, advised to change habits which can affect their health, or given medications to address both diseases. Cambridge - This fellowship focuses on the additional longer-term conditions that people with a new diagnosis of diabetes develop. The health journeys of people with diabetes compared to those without diabetes will be followed during the unique period of the COVID-19 era (2020-27) when lifestyles and access to health services changed dramatically. Using hospital and GP health records across the entire populations of England, Scotland and Wales (around 70 million people in total), this research will study the health consequences of having a new diagnosis of diabetes and for diverse population subgroups (by sex, age, ethnicity, socio-economic status and region). The results will inform guidelines on how people with diabetes can be best followed up in England, Scotland and Wales. University College London - Cancer and cardiovascular disease (CVD) are the two most common causes of mortality in the UK. Given the known health inequalities in prevention, treatment and outcomes of cancer and CVD in people with mental illness, it is important that research focusing on CVD and cancer includes mental health as a factor. It is desirable to identify patient groups less likely to access cancer or CVD screening, or more likely to suffer missed or late diagnoses. This project aims to draw on Electronic Health Records (EHRs) and other routinely collected data across the UK to quantify differences in cancer and CVD diagnosis rates and outcomes across mental health conditions, social determinants of health and other patient characteristics. It also aims to establish which patient characteristics lead to the co-occurrence of CVD, cancer and severe and complex mental illness (SCMI). Leeds - Heart failure (HF) is a condition consisting of symptoms (e.g. breathlessness, ankle swelling), clinical signs, and structural and/or functional abnormality of the heart. As many cases of HF are diagnosed each year in the NHS as the four most common causes of cancer combined, and HF has a worse prognosis than each of bladder, prostate and breast cancer. Heart failure is split into two types; where the heart is weak (heart failure with reduced ejection fraction) and where the heart does not relax enough to pump effectively (heart failure with preserved ejection fraction, HFpEF). HFpEF is becomingly increasingly common, and is forecast to become the most common type of HF. However, little is known about the scale of how many people have HFpEF in the UK, and how often HFpEF causes hospital admission or death after diagnosis. Also, many of these patients have delays to diagnosis, even after presenting to their GP with symptoms consistent with HFpEF. This Fellowship aims to use whole population, national linked health data to investigate how common HFpEF is, how people do after diagnosis, and whether inequalities affect this. It will also seek to develop a prediction model for HFpEF to help identify people with HFpEF earlier, in the primary care setting, so they can get the right treatment earlier. |
| Impact | Work ongoing |
| Start Year | 2024 |
| Description | BDCD PhD Students |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded six PhD studentships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Cathie Sudlow (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | The titles of the projects and partner university are below (names removed for anonymity) Oxford University- BLOod Test Trend for cancEr Detection (BLOTTED): an observational and prediction model development study using English primary care electronic health records data UCL- Repurposing and enriching cardiovascular risk prediction model to identify people at risk of cancer UCL- Expediting the diagnosis of cancer and other diseases where early diagnosis can improve clinical outcomes in patients presenting to a GP with new symptoms Cambridge- University- Advancing primary prevention strategies for complex diseases University of Bristol- Characterising a high-risk Type 2 Diabetes phenotype using big data - the role of comorbidity and ethnicity University of Swansea- Modelling the impact of diagnostic pathways in cancer and cardiovascular disease |
| Impact | Work ongoing |
| Start Year | 2023 |
| Description | BDCD PhD Students |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded six PhD studentships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Cathie Sudlow (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | The titles of the projects and partner university are below (names removed for anonymity) Oxford University- BLOod Test Trend for cancEr Detection (BLOTTED): an observational and prediction model development study using English primary care electronic health records data UCL- Repurposing and enriching cardiovascular risk prediction model to identify people at risk of cancer UCL- Expediting the diagnosis of cancer and other diseases where early diagnosis can improve clinical outcomes in patients presenting to a GP with new symptoms Cambridge- University- Advancing primary prevention strategies for complex diseases University of Bristol- Characterising a high-risk Type 2 Diabetes phenotype using big data - the role of comorbidity and ethnicity University of Swansea- Modelling the impact of diagnostic pathways in cancer and cardiovascular disease |
| Impact | Work ongoing |
| Start Year | 2023 |
| Description | BDCD PhD Students |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded six PhD studentships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Cathie Sudlow (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | The titles of the projects and partner university are below (names removed for anonymity) Oxford University- BLOod Test Trend for cancEr Detection (BLOTTED): an observational and prediction model development study using English primary care electronic health records data UCL- Repurposing and enriching cardiovascular risk prediction model to identify people at risk of cancer UCL- Expediting the diagnosis of cancer and other diseases where early diagnosis can improve clinical outcomes in patients presenting to a GP with new symptoms Cambridge- University- Advancing primary prevention strategies for complex diseases University of Bristol- Characterising a high-risk Type 2 Diabetes phenotype using big data - the role of comorbidity and ethnicity University of Swansea- Modelling the impact of diagnostic pathways in cancer and cardiovascular disease |
| Impact | Work ongoing |
| Start Year | 2023 |
| Description | BDCD PhD Students |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded six PhD studentships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Cathie Sudlow (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | The titles of the projects and partner university are below (names removed for anonymity) Oxford University- BLOod Test Trend for cancEr Detection (BLOTTED): an observational and prediction model development study using English primary care electronic health records data UCL- Repurposing and enriching cardiovascular risk prediction model to identify people at risk of cancer UCL- Expediting the diagnosis of cancer and other diseases where early diagnosis can improve clinical outcomes in patients presenting to a GP with new symptoms Cambridge- University- Advancing primary prevention strategies for complex diseases University of Bristol- Characterising a high-risk Type 2 Diabetes phenotype using big data - the role of comorbidity and ethnicity University of Swansea- Modelling the impact of diagnostic pathways in cancer and cardiovascular disease |
| Impact | Work ongoing |
| Start Year | 2023 |
| Description | BDCD PhD Students |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Health Data Research UK's Big Data for Complex Disease (BDCD) Driver Programme funded six PhD studentships. These apply the potential of large-scale data to address some of the most pressing challenges in contemporary healthcare. The programme is led by Professor Cathie Sudlow (HDR UK) and Professor Mark Lawler (Queen's University Belfast, HDR UK Northern Ireland), with a wider leadership team from across the UK. |
| Collaborator Contribution | The titles of the projects and partner university are below (names removed for anonymity) Oxford University- BLOod Test Trend for cancEr Detection (BLOTTED): an observational and prediction model development study using English primary care electronic health records data UCL- Repurposing and enriching cardiovascular risk prediction model to identify people at risk of cancer UCL- Expediting the diagnosis of cancer and other diseases where early diagnosis can improve clinical outcomes in patients presenting to a GP with new symptoms Cambridge- University- Advancing primary prevention strategies for complex diseases University of Bristol- Characterising a high-risk Type 2 Diabetes phenotype using big data - the role of comorbidity and ethnicity University of Swansea- Modelling the impact of diagnostic pathways in cancer and cardiovascular disease |
| Impact | Work ongoing |
| Start Year | 2023 |
| Description | BHF Data Science Centre: CVD-COVID-UK consortium |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Oversight and input into analysis: 1. First, second and booster dose COVID-19 vaccination and the risks of arterial and venous vascular events 2. The impact of COVID-19 on heart failure epidemiology, quality of care and outcomes across primary and secondary care 3. A regional approach for policy makers to tackle health inequalities in cardiovascular disease and its risk factors 4. Influence of COVID-19 on British burden of cardiovascular disease 5. Investigating short-term CVD risk calculated using SCORE2 in young adults with and without morbidities during the COVID-19 pandemic |
| Collaborator Contribution | Access to linked data and support in NHS England Secure Data Environment |
| Impact | Projects ongoing. |
| Start Year | 2023 |
| Description | DATA-CAN |
| Organisation | University of Leeds |
| Department | Leeds Institute of Data Analysis |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Providing data management and curation support for the following projects: 1. Investigate the effect of the COVID-19 pandemic on cancer referral, diagnosis, treatment, and outcomes in England using national data within the National Health Service (NHS) England Secure Data Environment (SDE). 2. Investigate the impact of COVID on the recurrence-free survival of cancer patients (focusing on ovarian and breast cancer patients). 3. Investigating the reliability of comparative effectiveness estimates from England's cancer registry data. |
| Collaborator Contribution | Leading, providing data access and analysis on: 1. Investigate the effect of the COVID-19 pandemic on cancer referral, diagnosis, treatment, and outcomes in England using national data within the National Health Service (NHS) England Secure Data Environment (SDE). 2. Investigate the impact of COVID on the recurrence-free survival of cancer patients (focusing on ovarian and breast cancer patients). 3. Investigating the reliability of comparative effectiveness estimates from England's cancer registry data. |
| Impact | No outputs yet |
| Start Year | 2023 |
| Description | Virtual Cardio-Oncology Research Initiative (VICORI) Programme |
| Organisation | University of Leicester |
| Department | NIHR Biomedical Research Centre |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Supporting the following projects with data management and curation support: 1. Refining the prediction of ischaemic and bleeding risk in patients with malignant disease and acute coronary syndromes: 2. Using large scale data to assess the relationship between Fluoropyrimidine chemotherapy and incident cardiovascular events. 3. Long term influence of cardiovascular therapies on cancer incidence and post-cancer complications 4. Presentation and outcomes for heart failure patients with and without cancer and the effect of cancer treatment: Real-world longitudinal cohort studies using the VICORI linked population database |
| Collaborator Contribution | Leading and analysing the data in the following projects: 1. Refining the prediction of ischaemic and bleeding risk in patients with malignant disease and acute coronary syndromes: 2. Using large scale data to assess the relationship between Fluoropyrimidine chemotherapy and incident cardiovascular events. 3. Long term influence of cardiovascular therapies on cancer incidence and post-cancer complications 4. Presentation and outcomes for heart failure patients with and without cancer and the effect of cancer treatment: Real-world longitudinal cohort studies using the VICORI linked population database |
| Impact | None yet |
| Start Year | 2023 |
| Title | CVD-COVID-UK/COVID-IMPACT Dataset Summary Dashboard |
| Description | The dashboard provides an overview and interactive summaries of the datasets currently available through CVD-COVID-UK/COVID-IMPACT within the secure Trusted Research Environments (TREs) provided by NHS England for England, the National Data Safe Haven for Scotland and the SAIL databank for Wales. The dashboard can be used to explore the data dictionaries, data coverage and data completeness for each of the datasets provisioned in England, Scotland, and Wales. The datasets include those from primary and secondary care, COVID lab tests and vaccinations, deaths, critical care, prescribing/dispensing, cardiovascular and stroke audits, maternity services and mental health. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2023 |
| Impact | https://zenodo.org/records/8361049 The dashboard is primarily aimed at researchers interested in finding out more about the datasets available through CVD-COVID-UK/COVID-IMPACT. Researchers preparing a project proposal may find this a useful tool to help plan their project and assess feasibility without having access to the data. |
| URL | https://bhfdatasciencecentre.org/dashboard/ |
| Title | Code List Comparison Tool |
| Description | The Codelist Comparison and Builder Tool streamlines the definition and comparison of codelists/phenotypes by integrating with external libraries such as the HDR UK Phenotype Library, OpenCodelists, and user-generated datasets |
| Type Of Technology | Webtool/Application |
| Year Produced | 2024 |
| Impact | This webtool provides users access to a streamline comparison model of external and user-provided libraries that enhances research workflows with greater accuracy, transparency, and efficiency. |
| URL | https://bhf-dsc-hds.shinyapps.io/codelist_tool/ |
| Title | Protocol and code for "First, second and booster dose COVID-19 vaccination and the risks of arterial and venous vascular events" project |
| Description | Protocol for analysis, code and phenotypes used in this project that are made publicly available via GitHub for reuse. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2024 |
| Open Source License? | Yes |
| Impact | None as yet but publicly available for reuse by other researchers to speed up future reserach. |
| URL | https://github.com/BHFDSC/CCU002_06 |
| Description | 3rd cohort of FLIER programme (Future Leaders in Innovation, Enterprise and Research) comprising workshop and panel session |
| 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 | workshop and panel session- speaker on expert panel |
| Year(s) Of Engagement Activity | 2024 |
| Description | 7 Aug 2023 - Unblocking GP Data for Researchers |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | This was event held by Secretary of State for Health's team in DHSC - attended by Chief Medical Officer for UK, National Statistician and other UK wide senior stakeholders - Cathie Sudlow attended this and was invited to Chair it. Insights will feed into Sudlow Review |
| Year(s) Of Engagement Activity | 2023 |
| Description | Agreement 25 The Legacy of the Good Friday Agreement: Cancer Knows no Borders "Honouring Paddy's legacy - putting the island of Ireland on the global map and driving the European cancer research effort" Queen's University Belfast, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | All Island Cancer Research Institute (AICRI) Showcase Event "Deploying Data to Deliver the Precision Oncology Paradigm". Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | American Society for Clinical Oncology Annual Congress "Groundshot versus Moonshot - synergies and challenges" Chicago, USA |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | American Society for Clinical Oncology Annual Congress "Addressing the cancer clinical trials crisis in Europe " Chicago, USA |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | American Society for Clinical Oncology Annual Congress "Cancer inequalities - The European Cancer Pulse" Chicago, USA |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Anaesthesia's Annual Congress, 13-15th Sept EICC, Edinburgh |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow delivered keynote lecture |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eicc.co.uk/whats-on/annual-congress-2023/ |
| Description | Apr 2024: Cancer Drug Development Forum Multi-Stakeholder Event "Cancer research and cancer care in Central and Eastern Europe. "Impact of Ukraine Conflict on clinical trials in Central and Eastern Europe" Krakow, Poland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark talk Apr 2024: Cancer Drug Development Forum Multi-Stakeholder Event "Cancer research and cancer care in Central and Eastern Europe. "Impact of Ukraine Conflict on clinical trials in Central and Eastern Europe" Krakow, Poland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Apr 2024: Euro-American Forum on Cancer, " The Ireland - Northern Ireland - US National Cancer Institute Cancer Consortium: An International Exemplar of The Heath Dividend of Peace" Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler talk Apr 2024: Euro-American Forum on Cancer, " The Ireland - Northern Ireland - US National Cancer Institute Cancer Consortium: An International Exemplar of The Heath Dividend of Peace" Dublin, Ireland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Apr 2024: Euro-American Forum on Cancer, "European Cancer Pulse Country Report: Ireland" Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler talk Apr 2024: Euro-American Forum on Cancer, "European Cancer Pulse Country Report: Ireland" Dublin, Ireland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Association of Physicians GB & Ireland (APAM 2024) - plenary lecture "Unifying Health Data in the UK" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow delivered plenary lecture 23.05.2024 |
| Year(s) Of Engagement Activity | 2024 |
| Description | BDCD All consortium meeting online October 2024 |
| 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 | Online 2 hour all consortia meeting to discuss updates, workstreams, scientific work, and PHD/Fellow work |
| Year(s) Of Engagement Activity | 2024 |
| Description | BDCD In person all consortium meeting in Edinburgh July 2024 |
| 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 | Brought together BDCD consortia to discuss: - Operational updates - ECR strategy - PhD and Fellow updates - Year 2 priorities and workstreams - PPIE strategy - Networking - Scientific updates BHF DSC, DATACAN/VICORI |
| Year(s) Of Engagement Activity | 2024 |
| Description | BDCD PPIE Strategy presentation to DATA-CAN PAG |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Involve public members in ethics process, not just research process. Need PPIE right from the start and at least two people per project. Emphasise my role as a key contact/support for public contributors coming in Grant process as laid out in Objective 2 has been done before - look to UCLH and RDS as examples Trauma informed approach - cancer diagnosis is in itself traumatic, cultural awareness is important too. Actions so fra: invited to join 10tth Dec and asked to create a top tips resource for researchers |
| Year(s) Of Engagement Activity | 2024 |
| Description | BDCD PPIE Strategy presentation to HDR UK PAB |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Summary of insights How will you bring in PEDRI good practice? How will you make sure lived experience of specific conditions are involved? How will you measure PPIE impact? Suggest use same feedback survey after all activities. Will you utilise existing pool of people at HDR UK? Could you bring public to monthly meetings with researchers? Need to look at making it more specific, currently quite generalised, how will you bring in specific clinical elements of this programme? PPIE budget - how much of the budget is dedicated to PPIE and how does it compare to other driver programmes: get exact numbers and feed back to group Industry input, where are the opportunities for this? Standardised approach to PPIE work well across most of the objectives but need to consider the methodology of each research project, especially those looking at risk prediction and AI tools. Establish KPIs to support monitoring and evaluation Outcomes Actions so far: shared with DATA-CAN PAG to try and make it more specific to lived experience of cancer. Created an evaluation form to support researchers. |
| Year(s) Of Engagement Activity | 2024 |
| Description | BDCD Public Involvement Workshop for researchers |
| 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 | On 10 December 2024, BDCD Phds and Fellows participated in a Public and Patient Involvement and Engagement (PPIE) event organised by BDCD, leading a discussion focused on integrating PPIE into his fellowship research. The conversation emphasised the importance of selecting participants representative of the target study group, particularly those from ethnic minority backgrounds who are often underrepresented in research. To engage these communities effectively, suggestions included involving trusted community figures (e.g. general practitioners) and charities familiar with specific conditions. Participants also discussed the need for shared decision-making in treatment plans and the importance of accessible communication, such as using plain English or relatable analogies before, during and study completion. |
| Year(s) Of Engagement Activity | 2024 |
| Description | BDCD/Inflammation and Immunity joint ECR webinars, October 2024: "Preventative opportunities for CHD and stroke in multi-ancestry patients with non-cardiovascular conditions |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | BDCD/Inflammation and Immunity joint ECR webinars, October 2024: "Preventative opportunities for CHD and stroke in multi-ancestry patients with non-cardiovascular conditions" Online. Elias Allara is a fellow supported by the BDCD programme. Presentation and discussion with other ECRs to strengthen collaborations both within and outside of the BDCD Programme. |
| Year(s) Of Engagement Activity | 2024 |
| Description | BMJ Research Forum |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow attended |
| Year(s) Of Engagement Activity | 2023 |
| Description | Big Data for Complex Disease- Kick off Meeting July 2023 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Kick off meeting with BDCD consortia to discuss Driver Programme and workstreams. |
| Year(s) Of Engagement Activity | 2023 |
| Description | British Cardiovascular Society Annual Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Conference speaker |
| Year(s) Of Engagement Activity | 2024 |
| Description | British Science Association 'For Thought' summit |
| 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 | (4 person panel - talk & Q&A) - in person |
| Year(s) Of Engagement Activity | 2023 |
| Description | Brussels Spanish Presidency event European Beating Cancer Plan - Implementation in the Member States "Addressing Cancer Inequalities" European Parliament, Brussels, Belgium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | CDDF Biomarker Multi-Stakeholder Conference "Making Biomarkers relevant for patients and health systems: Primed for Primetime" Amsterdam, The Netherlands |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Cambridge Neurology and Neuroscience Postgraduate Meetings - Title: Uniting the UK's Health Data: why should neurologists care? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow speaker 12/03/2024 |
| Year(s) Of Engagement Activity | 2024 |
| Description | Cancer Drug Development Forum Webinar "Beating Cancer In Europe - Time to Deliver " The European Cancer Groundshot (V) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Data for R&D Autumn Conference - "A new era in health data: mapping strengths and identifying opportunities for research". |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow delivered speaking slot 14:45 03 October 2023 |
| Year(s) Of Engagement Activity | 2023 |
| Description | Datamind Data Science meeting, Deutsche Bank, London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | In person - afternoon slot Speaker Briefing-MQ & Datamind's Data Science Meeting |
| Year(s) Of Engagement Activity | 2023 |
| Description | Dec 2024: All Island Cancer Alliances "Opinion is the lowest form of evidence: Data-informed intelligence to shift the dial on cancer" University College Dublin, Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Dec 2024: All Island Cancer Alliances "Opinion is the lowest form of evidence: Data-informed intelligence to shift the dial on cancer" University College Dublin, Dublin, Ireland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Dec 2024: St Georges House Consultation: A Blueprint for the NHS: Fixing the Problems. Keynote "Getting Back on Track: Follow the Science, Follow the Data" Windsor Castle, Windsor UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Policy presentation to influence government on health system planning |
| Year(s) Of Engagement Activity | 2024 |
| Description | ECHOS Norwegian Cancer Hub Conference Keynote: "European Groundshot - Reimagining Cancer Research and its Implementation across Europe" Oslo, Norway |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | ESC Congress, September 2024: "Machine learning for prediction of incident heart failure and heart failure hospitalisation: multi-cohort development, validation and association with clinical phenotypes. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Ramesh Nadarajah presentation to ESC Congress, September 2024: "Machine learning for prediction of incident heart failure and heart failure hospitalisation: multi-cohort development, validation and association with clinical phenotypes." London, UK. Ramesh Nadarajah is a clinical fellow supported by the BDCD Programme. Outcome Algorithm developed to inform prediction of heart failure using whole population data shared at European Society of Cardiology. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://esc365.escardio.org/presentation/286636?query=ramesh%20nadarajah |
| Description | EU Cancer Mission Day Ireland "Turning data into intelligence for better cancer care", Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Early Detection of Cancer Conference, Central Hall, Westminster |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Attendance |
| Year(s) Of Engagement Activity | 2023 |
| Description | European Cancer Hubs Conference - Establishing of Cancer Mission Hubs: Networks and Synergies "Groundshot: a pan-European, patient-centered, and data-driven approach to tackling cancer, a Lancet Oncology Commission(Keynote)" Lisbon, Portugal |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | European Congress of Pathology Keynote Lecture "Data Eat Opinion for Lunch" Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Feb 2024: Cancer Drug Development Forum Conference, "Biomarker White Paper" Amsterdam, The Netherlands |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler talk Feb 2024: Cancer Drug Development Forum Conference, "Biomarker White Paper" Amsterdam, The Netherlands |
| Year(s) Of Engagement Activity | 2024 |
| Description | Feb 2024: Ending Financial Discrimination against Cancer Survivors; Panellist, Brussels, Belgium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler talk Feb 2024: Ending Financial Discrimination against Cancer Survivors; Panellist, Brussels, Belgium |
| Year(s) Of Engagement Activity | 2024 |
| Description | Feb 2024: European Association for Cancer Research Irish Association for Cancer Research - American Association for Cancer Research (EACR-IACR-AACR) Joint Conference "The Critical Importance of Research in Delivering 21st Century Cancer Care: Indicators from the Lancet Oncology European Groundshot Commission" Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler talk Feb 2024: European Association for Cancer Research Irish Association for Cancer Research - American Association for Cancer Research (EACR-IACR-AACR) Joint Conference "The Critical Importance of Research in Delivering 21st Century Cancer Care: Indicators from the Lancet Oncology European Groundshot Commission" Dublin, Ireland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Health Care UK A radical Rethink "Follow the Science Follow the Data or Data Eat Opinion for Lunch" St Georges House Consultation Winsor Castle UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Inflammation and Immunity Driver Programme meeting in Belfast |
| 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 | Meeting to explore collaborative activities across HDR UK Driver Programmes |
| Year(s) Of Engagement Activity | 2023 |
| Description | Innovation Conference "Driving Innovation in Cancer - Follow The Data," Oporto, Portugal |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Interview with Associated Press |
| 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 | Cathie Sudlow press interview 12/01/2024 |
| Year(s) Of Engagement Activity | 2024 |
| Description | Interview with Radio 4 - Today programme |
| 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 | Cathie Sudlow radio interview 16/01/2024 |
| Year(s) Of Engagement Activity | 2024 |
| Description | Invited Seminar at the Heart and Lung Research Institute, Cambridge: "Challenges of working with large scale multisource EHR data" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Prof Angela Wood, co-lead. Engagement with research institute at University of Cambridge to describe work relating to the Big Data for Complex Disease Programme using electronic health record data |
| Year(s) Of Engagement Activity | 2024 |
| Description | Invited Seminar at the MRC Biostatistics Unit, Cambridge: "Opportunities utilising new electronic health record resources". |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Prof Angela Wood, co-lead. Engagement with research institute at University of Cambridge to describe work relating to the Big Data for Complex Disease Programme using electronic health record data |
| Year(s) Of Engagement Activity | 2024 |
| Description | Invited Seminar: Strategy and Integration Group Retreat, HDR UK: "Whole-population data and Defining Diseases" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation by Professor Angela Wood, co-lead, to Health Data Research UK senior leadership and wider community on activities related to the Big Data for Complex Disease Programme using whole population electronic health records. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Jan 2024: World Cancer Day Special Seminar "Delivering Cancer Research with Impact: Follow the Science; Follow the Data Helsinki, Finland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler talk Jan 2024: World Cancer Day Special Seminar "Delivering Cancer Research with Impact: Follow the Science; Follow the Data Helsinki, Finland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Jul 2024: Tyndall National Institute Invited Talk "Driving a health revolution: The Critical Role of Data," Cork, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Jul 2024: Tyndall National Institute Invited Talk "Driving a health revolution: The Critical Role of Data," Cork, Ireland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Jun 2024: ACCelerate Belfast UK Colorectal Cancer Symposium "Defusing the economic time bomb," Belfast, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Jun 2024: ACCelerate Belfast UK Colorectal Cancer Symposium "Defusing the economic time bomb," Belfast, UK Mark Lawler speaker |
| Year(s) Of Engagement Activity | 2024 |
| Description | June 2024; American Society of Clinical Oncology Leaders Meeting: "Cancer Knows No Borders," Chicago, USA. HDR UK provided support to Mark Lawler. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler June 2024; American Society of Clinical Oncology Leaders Meeting: "Cancer Knows No Borders," Chicago, USA. HDR UK provided support to Mark Lawler. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://conferences.asco.org/am/attend |
| Description | Kidney Research UK Board Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Meeting 25/06/2024 |
| Year(s) Of Engagement Activity | 2024 |
| Description | Launch of "The future of cancer care in the UK - time for a radical and sustainable National Cancer Plan." House of Commons, Westminster UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fpubmed.ncbi.nlm.nih.gov%2F37977167... |
| Description | May 2024: European Society of Surgical Oncology (ESSO) Transversal Webinar on disparities in cancer care "Delineating and addressing disparities in cancer research and care: The Primacy of Data" (Virtual) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler talk May 2024: European Society of Surgical Oncology (ESSO) Transversal Webinar on disparities in cancer care "Delineating and addressing disparities in cancer research and care: The Primacy of Data" (Virtual) |
| Year(s) Of Engagement Activity | 2024 |
| Description | Medical Innovation and Technology Summit "It's All about the Data" Belfast, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Molecular Epidemiology and Cohorts meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow speaker 28.05.2024 |
| Year(s) Of Engagement Activity | 2024 |
| Description | NDPH Global Health Science and Epidemiology MSc Masterclass 2023 - 2024 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | NDPH Global Health Science and Epidemiology MSc Masterclass 2023 - 2024 Cathie Sudlow Online masterclass for MSc student cohort 19/01/2024 |
| Year(s) Of Engagement Activity | 2024 |
| Description | Northern Ireland Clinical Research Conference Panellist, Belfast, UK |
| 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 | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Nov 2024: AIMDay Predictive Health Analytics "Deploying Data to Drive a Sustainable Health Revolution" Belfast, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Nov 2024: AIMDay Predictive Health Analytics "Deploying Data to Drive a Sustainable Health Revolution" Belfast, UK |
| Year(s) Of Engagement Activity | 2024 |
| Description | Nov 2024: European Cancer Summit "The European Cancer Pulse - from data to policy change" Brussels, Belgium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Nov 2024: European Cancer Summit "The European Cancer Pulse - from data to policy change" Brussels, Belgium |
| Year(s) Of Engagement Activity | 2024 |
| Description | Nov 2024: European Cancer Summit "Together against Cancer in a Time of Crisis - The European Cancer Organisation Focussed Topic Network on Emergencies and Crises" Brussels, Belgium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on policy at international cancer summit |
| Year(s) Of Engagement Activity | 2024 |
| Description | Nov 2024: Global Innovation Summit "Harnessing the Economic Dividend of Health - Setting the Scene" Belfast, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Nov 2024: Global Innovation Summit "Harnessing the Economic Dividend of Health - Setting the Scene" Belfast, UK |
| Year(s) Of Engagement Activity | 2024 |
| Description | Nov 2024: Global Innovation Summit "Health For All - Bridging The Gap" Belfast, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Nov 2024: Global Innovation Summit "Health For All - Bridging The Gap" Belfast, UK |
| Year(s) Of Engagement Activity | 2024 |
| Description | Nov 2024: Global Innovation Summit Keynote: "Opinion is the Lowest Form of Evidence: Deploying Data to Drive a Sustainable Cancer Revolution" Belfast, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Mark Lawler speaker Nov 2024: Global Innovation Summit Keynote: "Opinion is the Lowest Form of Evidence: Deploying Data to Drive a Sustainable Cancer Revolution" Belfast, UK |
| Year(s) Of Engagement Activity | 2024 |
| Description | Nov 2024: Higher Education Authority North South Research Programme: "Partnering to Advance Healthcare on the island of Ireland" (Panellist), Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Panelist in discussion of all-Ireland healthcare |
| Year(s) Of Engagement Activity | 2024 |
| Description | Oct 2024: Administrative Data Research Away Day Panellist "The Data Landscape" Limavady, Northern Ireland, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Policy talk on Northern Ireland cancer landscape |
| Year(s) Of Engagement Activity | 2024 |
| Description | Oct 2024: ESO Refresher Course on Melanoma "Empowering the patient - the only way to go" Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Oct 2024: ESO Refresher Course on Melanoma "Empowering the patient - the only way to go" Dublin, Ireland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Oct 2024: European Cancer Organisation Digital Health Focussed Topic Network "The European Health Data Space" Panellist |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Oct 2024: European Cancer Organisation Digital Health Focussed Topic Network "The European Health Data Space" Panellist |
| Year(s) Of Engagement Activity | 2024 |
| Description | Oct 2024: European School of Oncology (ESO) Refresher Course on Melanoma "Driving the cancer revolution: The Critical Role of Data" Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Oct 2024: European School of Oncology (ESO) Refresher Course on Melanoma "Driving the cancer revolution: The Critical Role of Data" Dublin, Ireland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Oct 2024: Securing the UK's potential as a global hub for Life Sciences to realise Britain's health, wealth, and resilience "Driving a cancer revolution: Seizing The Moment through research and innovation" London, UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Oct 2024: Securing the UK's potential as a global hub for Life Sciences to realise Britain's health, wealth, and resilience "Driving a cancer revolution: Seizing The Moment through research and innovation" London, UK |
| Year(s) Of Engagement Activity | 2024 |
| Description | Oncology Days - Keep in step with Innovation, "Digging into the Gaps - Addressing Cancer Care Inequalities in Central and eastern Europe" Montenegro (Hybrid) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Organisation for European Cancer Institutes Keynote address "The Lancet Oncology European Groundshot Commission" Paris, France |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | PPIE Activity - Big Data for Complex Disease project proposal review and feedback by public contributors |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Four Big Data for Complex Disease PhD students and fellows attended the Approvals and Oversight Board to present their project proposals to use data as part of the CVD-COVID-UK/COVID-IMPACT consortium. They received feedback from public contributors as part of the process. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://bhfdatasciencecentre.org/wp-content/uploads/2023/07/CVD-COVID-UK-COVID-IMPACT-Project-Approv... |
| Description | PPIE Strategy Workshop 1 August 2024 |
| 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 | Summary of insights: Importance of collaborating with other organisations within the sector Using this programme as an opportunity to showcase the real-life impact health data research can have and share this message with the public Importance of the public and patients being included at every stage of the research Starting simple and getting researchers in conversation with public contributors early on Ensuring different opportunities are offered for the public to get involved, as some will be interested in the very detailed research and others will be more interested in the general work of the programme Make sure PPIE is made a priority for the programme Changes implemented Removed theory of change based questions and dedicated a a section of the group discussion to ensuring a positive experience for patients and the public. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Poster presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Freya Pollington poster presentation June 2024; Cancer Research UK Early Diagnosis Conference: "Risk of oesophago-gastric cancer in patients presenting to their GP with potential symptoms and symptomatically similar diseases" Birmingham, UK. Freya Pollington is supported by HDR UK, BDCD PhD studentship. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.cancerresearchuk.org/sites/default/files/ed_conference_2024_full_programme.pdf |
| Description | Presentation to public contributors |
| 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 | Genevieve Cezard presented research project was presented to the public contributor representatives of the CVD-COVID-UK/COVID-IMPACT Approvals & Oversight Board on Thursday, 17 October 2024 at 09:30 to discuss my project proposal CCU093: "Understanding the relationship between diabetes and the development of multiple long-term conditions in England, Scotland and Wales during and after the COVID-19 pandemic". The event included two public members and one PPIE manager and I received feedback on my project and its relevance to the public. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Science Summit United Nationals General Assembly "Cancer and the Health Dividend of Peace" New York, USA |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Seminar - The Polypill in the Primary Prevention of Heart Attacks and Strokes (Nicholas Wald and Aroon Hingorani) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow attended and spoke |
| Year(s) Of Engagement Activity | 2024 |
| Description | Sep 2024: Macmillan Debate "Are Single disease Charities relevant? (Panellist) (V) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler Sep 2024: Macmillan Debate "Are Single disease Charities relevant? (Panellist) (V) |
| Year(s) Of Engagement Activity | 2024 |
| Description | Sep 2024: Smart Health Summit 2024 "Ireland's Strategy for Implementing the European Health Data Space," (Panellist) Dublin, Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Sep 2024: Smart Health Summit 2024 "Ireland's Strategy for Implementing the European Health Data Space," (Panellist) Dublin, Ireland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Sep 2024: World Cancer Congress Plenary Session "Value based health care - a mission to truly reduce cancer inequalities" Geneva, Switzerland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler speaker Sep 2024: World Cancer Congress Plenary Session "Value based health care - a mission to truly reduce cancer inequalities" Geneva, Switzerland |
| Year(s) Of Engagement Activity | 2024 |
| Description | Sharing Progress in Cancer Care Webinar "A data driven approach to improve cancer diagnosis" (Virtual) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Swedish EU Presidency Event - From Breakthrough to Follow through in Radiotherapy "Groundshot: a pan-European, patient-centered, and data-driven approach to tackling cancer - the role of radiotherapy and the need for research and investment" Swedish Embassy, Vienna, Austria |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | Talk at Personalised Care Week 2024: Multi-morbidity and Personalised Care Conference and Personalised Care Week |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Naomi Launders was invited to talk at Personalised Care Week 2024: Multi-morbidity and Personalised Care Conference and Personalised Care Week It was a webinar for healthcare professionals. |
| Year(s) Of Engagement Activity | 2024 |
| Description | The Economist 9th World Cancer Series Europe "Europe's Beating Cancer Plan: Taking Stock of Progress," Brussels, Belgium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mark Lawler gave talk |
| Year(s) Of Engagement Activity | 2023 |
| Description | The Times Health Summit 2024, in Association with Vitality and AstraZeneca |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Conference |
| Year(s) Of Engagement Activity | 2024 |
| Description | Turing AIUK 2024 panel member, QE2 Centre, Westminster |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Cathie Sudlow Panel member and speaker |
| Year(s) Of Engagement Activity | 2024 |
| Description | Work to create lay summary for data access protocol |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Series of meetings with PPIE representatives to write a lay summary for data access protocol. Outcomes included fed into multiple versions of the summary and we used the meeting as a final review opportunity and to cut word count. Clarification on the PPIE plans of the programme and how PPIE will fit into future data access processes. |
| Year(s) Of Engagement Activity | 2024 |