UK Health Informatics Research Network
Lead Research Organisation:
University of Edinburgh
Department Name: Centre of Population Health Sciences
Abstract
The primary aim of the UK Health Informatics Research Network ("Network") is to strengthen the UK's capability in health informatics research. It will achieve this by building inclusive partnerships, promoting co-ordination of key activities and acting as a signpost of best practice both in the UK and internationally.
The Network will be led by the Farr Institute of Health Informatics Research ("Farr Institute") which is comprised of four nodes distributed across the UK and led from the University College London, University of Manchester, Swansea University, and the University of Dundee. In total the Farr Institute involves 24 UK academic institutions and two MRC units with expertise in health informatics research. It aims to deliver high-quality, cutting-edge research linking electronic health data with other forms of research and routinely collected data, as well as building capacity in health informatics research.
The Network will be inclusive and harness expertise in the wider UK and where appropriate international research community; develop methodologies; share best practice; provide a central route for collaborating with industry, the NHS and policy; and engage with the public to promote wider debate about the use of health records in research. It will act as an open and dynamic forum to promote outstanding research. The Network and Farr Institute are not responsible for providing data, but will work with the data providers within the NHS, academia, industry and across the public sector to share and develop methodological approaches to using the data and sharing best practice. Together the Network and the Farr Institute aim to transform the landscape of health informatics in ways that will lead to significant health and economic benefits for the UK.
In order to build the UK's capability in health informatics research, the UK Health Informatics Research Network will promote wide participation. Membership is open to all academic, government, NHS, public and private sector researchers and other professionals with an interest in health informatics from bona fide organisations. This will include colleagues from across all sectors who are involved in the provision, collection, analysis, management, control, and promotion of health and health-related data for approved research purposes. These individuals include, but are not limited to, computer scientists, software engineers, statisticians, healthcare providers, clinicians, ethicists, bio-informaticians, social scientists, and regulators. The objective of the Network is to make a significant global impact in seven key areas:
? Promoting cutting-edge inter-disciplinary research at scale
? Providing an interface to promote collaboration between academia, industry and the NHS
? Developing methodologies for the linkage and analysis of large data sets
? Developing standards and best practice for interoperability across health and non-health related data sets
? Coordinating training and career development opportunities
? Developing dynamic and sustained ways of engaging with the public
? Developing a coherent vision of health informatics research in the UK supporting the knowledge economy in a global context.
The Network will be led by the Farr Institute of Health Informatics Research ("Farr Institute") which is comprised of four nodes distributed across the UK and led from the University College London, University of Manchester, Swansea University, and the University of Dundee. In total the Farr Institute involves 24 UK academic institutions and two MRC units with expertise in health informatics research. It aims to deliver high-quality, cutting-edge research linking electronic health data with other forms of research and routinely collected data, as well as building capacity in health informatics research.
The Network will be inclusive and harness expertise in the wider UK and where appropriate international research community; develop methodologies; share best practice; provide a central route for collaborating with industry, the NHS and policy; and engage with the public to promote wider debate about the use of health records in research. It will act as an open and dynamic forum to promote outstanding research. The Network and Farr Institute are not responsible for providing data, but will work with the data providers within the NHS, academia, industry and across the public sector to share and develop methodological approaches to using the data and sharing best practice. Together the Network and the Farr Institute aim to transform the landscape of health informatics in ways that will lead to significant health and economic benefits for the UK.
In order to build the UK's capability in health informatics research, the UK Health Informatics Research Network will promote wide participation. Membership is open to all academic, government, NHS, public and private sector researchers and other professionals with an interest in health informatics from bona fide organisations. This will include colleagues from across all sectors who are involved in the provision, collection, analysis, management, control, and promotion of health and health-related data for approved research purposes. These individuals include, but are not limited to, computer scientists, software engineers, statisticians, healthcare providers, clinicians, ethicists, bio-informaticians, social scientists, and regulators. The objective of the Network is to make a significant global impact in seven key areas:
? Promoting cutting-edge inter-disciplinary research at scale
? Providing an interface to promote collaboration between academia, industry and the NHS
? Developing methodologies for the linkage and analysis of large data sets
? Developing standards and best practice for interoperability across health and non-health related data sets
? Coordinating training and career development opportunities
? Developing dynamic and sustained ways of engaging with the public
? Developing a coherent vision of health informatics research in the UK supporting the knowledge economy in a global context.
Technical Summary
The primary aim of the UK Health Informatics Research Network ("Network") is to strengthen the UK's capability in health informatics research. It will achieve this by building inclusive partnerships, promoting co-ordination of key activities and acting as a signpost of best practice both in the UK and internationally.
The Network will be led by the Farr Institute of Health Informatics Research ("Farr Institute") which is comprised of four nodes distributed across the UK and led from the University College London, University of Manchester, Swansea University, and the University of Dundee. In total the Farr Institute involves 24 UK academic institutions and two MRC units with expertise in health informatics research. It aims to deliver high-quality, cutting-edge research linking electronic health data with other forms of research and routinely collected data, as well as building capacity in health informatics research.
The Network will be inclusive and harness expertise in the wider UK and where appropriate international research community; develop methodologies; share best practice; provide a central route for collaborating with industry, the NHS and policy; and engage with the public to promote wider debate about the use of health records in research. It will act as an open and dynamic forum to promote outstanding research. The Network and Farr Institute are not responsible for providing data, but will work with the data providers within the NHS, academia, industry and across the public sector to share and develop methodological approaches to using the data and sharing best practice. Together the Network and the Farr Institute aim to transform the landscape of health informatics in ways that will lead to significant health and economic benefits for the UK.
In order to build the UK's capability in health informatics research, the UK Health Informatics Research Network will promote wide participation. Membership is open to all academic, government, NHS, public and private sector researchers and other professionals with an interest in health informatics from bona fide organisations. This will include colleagues from across all sectors who are involved in the provision, collection, analysis, management, control, and promotion of health and health-related data for approved research purposes. These individuals include, but are not limited to, computer scientists, software engineers, statisticians, healthcare providers, clinicians, ethicists, bio-informaticians, social scientists, and regulators. The objective of the Network is to make a significant global impact in seven key areas:
? Promoting cutting-edge inter-disciplinary research at scale
? Providing an interface to promote collaboration between academia, industry and the NHS
? Developing methodologies for the linkage and analysis of large data sets
? Developing standards and best practice for interoperability across health and non-health related data sets
? Coordinating training and career development opportunities
? Developing dynamic and sustained ways of engaging with the public
? Developing a coherent vision of health informatics research in the UK supporting the knowledge economy in a global context.
The Network will be led by the Farr Institute of Health Informatics Research ("Farr Institute") which is comprised of four nodes distributed across the UK and led from the University College London, University of Manchester, Swansea University, and the University of Dundee. In total the Farr Institute involves 24 UK academic institutions and two MRC units with expertise in health informatics research. It aims to deliver high-quality, cutting-edge research linking electronic health data with other forms of research and routinely collected data, as well as building capacity in health informatics research.
The Network will be inclusive and harness expertise in the wider UK and where appropriate international research community; develop methodologies; share best practice; provide a central route for collaborating with industry, the NHS and policy; and engage with the public to promote wider debate about the use of health records in research. It will act as an open and dynamic forum to promote outstanding research. The Network and Farr Institute are not responsible for providing data, but will work with the data providers within the NHS, academia, industry and across the public sector to share and develop methodological approaches to using the data and sharing best practice. Together the Network and the Farr Institute aim to transform the landscape of health informatics in ways that will lead to significant health and economic benefits for the UK.
In order to build the UK's capability in health informatics research, the UK Health Informatics Research Network will promote wide participation. Membership is open to all academic, government, NHS, public and private sector researchers and other professionals with an interest in health informatics from bona fide organisations. This will include colleagues from across all sectors who are involved in the provision, collection, analysis, management, control, and promotion of health and health-related data for approved research purposes. These individuals include, but are not limited to, computer scientists, software engineers, statisticians, healthcare providers, clinicians, ethicists, bio-informaticians, social scientists, and regulators. The objective of the Network is to make a significant global impact in seven key areas:
? Promoting cutting-edge inter-disciplinary research at scale
? Providing an interface to promote collaboration between academia, industry and the NHS
? Developing methodologies for the linkage and analysis of large data sets
? Developing standards and best practice for interoperability across health and non-health related data sets
? Coordinating training and career development opportunities
? Developing dynamic and sustained ways of engaging with the public
? Developing a coherent vision of health informatics research in the UK supporting the knowledge economy in a global context.
Organisations
- University of Edinburgh (Lead Research Organisation)
- NHS England (Collaboration)
- KEELE UNIVERSITY (Collaboration)
- UK Biobank (Collaboration)
- AstraZeneca (Collaboration)
- QUEEN MARY UNIVERSITY OF LONDON (Collaboration)
- MQ Mental Health Research (Collaboration)
- Akcea Therapeutics (Collaboration)
- UK and Scottish Renal Registries (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- Institute of Clinical and Evaluative Sciences (ICES) (Collaboration)
- University College London (Collaboration)
- PUBLIC HEALTH ENGLAND (Collaboration)
- University College London (Collaboration)
- Wellcome Trust (Collaboration)
- British Heart Foundation (BHF) (Collaboration)
- National Institute for Health Research (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Farr Institute of Health Informatics Research (Collaboration)
- Alan Turing Institute (Collaboration)
- London School of Hygiene and Tropical Medicine (LSHTM) (Collaboration)
- HEALTH DATA RESEARCH UK (Collaboration)
- Servier Laboratories (Collaboration)
- UNIVERSITY OF YORK (Collaboration)
- UK Renal Data Collaboration (Collaboration)
- European Commission (Collaboration)
Publications
Abraham M
(2017)
A systematic review of maternal smoking during pregnancy and fetal measurements with meta-analysis.
in PloS one
Aitken M
(2019)
Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research
in International Journal of Population Data Science
Aitken M
(2018)
Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment.
in International journal of population data science
Aitken M
(2016)
Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.
in BMC medical ethics
Aitken M
(2018)
Who benefits and how? Public expectations of public benefits from data-intensive health research
in Big Data & Society
Al Sallakh MA
(2017)
Defining asthma and assessing asthma outcomes using electronic health record data: a systematic scoping review.
in The European respiratory journal
Aucott L
(2017)
Differences in Body Mass Index between Siblings Who Are Discordant for Exposure to Antenatal Maternal Smoking.
in Paediatric and perinatal epidemiology
Babl FE
(2017)
Bell's Palsy in Children (BellPIC): protocol for a multicentre, placebo-controlled randomized trial.
in BMC pediatrics
Ball S
(2020)
Monitoring indirect impact of COVID-19 pandemic on services for cardiovascular diseases in the UK.
in Heart (British Cardiac Society)
| Title | #datasaveslives |
| Description | A video shot at The Farr Institute conference in 2015. Captures researchers talking about why use of routinely collected administrative data for health and health care research improves the populations health and care. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2015 |
| Impact | Ability to positively promote use of administrative data linkage to the publics at meetings and through social media. |
| URL | https://www.youtube.com/watch?v=jWfuPTmUti4 |
| Title | PhD Student videos |
| Description | The students attending the Farr Institute PhD Symposium in 2015 were asked to record 2 minute videos to explain their research and aspirations. Collected for viewing on the Farr Institute youtube channel. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2015 |
| Impact | Ability to advertise the research of the Farr Institute to professionals and the publics. |
| URL | https://www.youtube.com/watch?v=Iea7wqW_mWs&list=PLVzvg5mhXh5PmbJDKjL-4gAhqS11f1z-q |
| Description | AMS Team Science |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://acmedsci.ac.uk/publications/working-group-and-taskforce-reports |
| Description | Advice to Jo Churchill MP, Private members bill on NDG |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | http://services.parliament.uk/bills/2016-17/healthandsocialcarenationaldataguardian.html |
| Description | Chair of Scottish Digital Health and Care Strategy Strategic Overisight Group |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | http://www.ehealth.nhs.scot/strategies/the-person-centred-ehealth-strategy-and-delivery-plan-stage-o... |
| Description | Chair of Scottish Government Pharmacy Scoping Taskforce |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Decision-making matrix for organisations to assess readiness for data sharing |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| URL | https://www.youtube.com/watch?v=9H1wpoAwmZc&list=PLbqYbaI1ml7RV3ZzsYzSCxcL1mD5X0Ai5&index=4 |
| Description | EMIF consortium report on legal and technical frameworks for record linkage |
| Geographic Reach | Europe |
| Policy Influence Type | Membership of a guideline committee |
| Description | Estimating excess 1-year mortality associated with the COVID-19 |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| Impact | We provide policy makers, researchers, and the public a simple model and an online tool for understanding excess mortality over 1 year from the COVID-19 pandemic, based on age, sex, and underlying condition-specific estimates. These results signal the need for sustained stringent suppression measures as well as sustained efforts to target those at highest risk because of underlying conditions with a range of preventive interventions. Countries should assess the overall (direct and indirect) effects of the pandemic on excess mortality. |
| Description | Excess cancer deaths in COVID-19 |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| Impact | Our work on excess cancer deaths in COVID-19 has been in the media continuously since March, now published in Lancet, and has been included in SAGE priorities and informed several policy changes including the early focus on 'indirect' deaths, the weekly reporting of excess deaths by the Office for National Statistics, and approaches to understanding vulnerable patients. A number of outlets featured the study outcomes including BBC Panorama's 'Britain's Cancer Crisis', the Independent's 'Cancer is the other 'big C' we can't afford to push aside' and Macmillian Cancer Support's 'The Forgotten 'C'? The impact of Covid-19 on cancer care'. https://www.bbc.co.uk/programmes/m000kqzv https://www.independent.co.uk/voices/coronavirus-nhs-cancer-testing-death-toll-illness-symptoms-check-gp-a9492161.html https://www.macmillan.org.uk/assets/forgotten-c-impact-of-covid-19-on-cancer-care.pdf |
| Description | Guangdong Province FAO |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Guangdong Province FAO return visit |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Guangdong Province Party Secretary visit |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Irish Health Board Data Sharing model |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | http://www.hrb.ie/uploads/tx_hrbpublications/Proposals_for_an_Enabling_Data_Environment_for_Health_a... |
| Description | Lead, "Evidence-Based Prioritization of Public Health Problems in Scotland" Project (for Scottish Government/NHS) |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | In November 2017, Prof Frank was asked to chair a half-dozen-member Stakeholder/Expert Advisory Group to create, based on scientific evidence, a set of criteria for use in a broadly participatory process to set public health priorities for Scotland, as one step in an ongoing Public Health Review headed by Dr Marion Bain, for the Scottish Government (SG) and NHS. Those criteria were created within six weeks, submitted to the Review, and are now (early 2018) being used in a series of Scotland-wide participatory stakeholder workshops to actually set public health priorities to guide a forthcoming major reorganisation of public health services in Scotland. Prof Frank is also a member of a small Task Force to synthesise all the results of that Scotland-wide stakeholder consultation to prioritise its public health problems, using the methodology his Advisory Group produced in late 2017, which is to meet for the first time on March 15, 2018, and then report to the SG's PH Review. |
| URL | http://www.gov.scot/Topics/Health/Healthy-Living/Public-Health-Reform |
| Description | Member of International Independent Expert Advisory Panel to advise the Scottish Government on the Scottish Digital Health and Care Strategy |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | National Data Guardian REVIEW OF DATA SECURITY, CONSENT AND OPT-OUTS |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://www.gov.uk/government/publications/review-of-data-security-consent-and-opt-outs |
| Description | OurRisk.CoV risk calculator |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| Impact | Our OurRisk.CoV risk calculator (available here: http://covid19-phenomics.org/PrototypeOurRiskCoV.html) has had 1.3 million pageviews from 636K users across the world (e.g. 21% of users from the United States). The risk calculator is also on the BHF website (https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/coronavirus-and-your-health/how-to-find-out-your-risk-when-it-comes-to-coronavirus) |
| URL | https://covid19-phenomics.org/PrototypeOurRiskCoV.html |
| Description | Research Project Supervision for 12 MPH students since 2013 |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Each year since 2013, three or four graduating MPH students from the University of Edinburgh's on-campus MPH programme have selected SCPHRP as the venue for conducting their three-month MPH research project, under the active supervision of SCPHRP Fellows and staff. While they are based with us, they also become familiar with how SCPHRP works with its policy and practice stakeholders to move its research into action. This contributes to the research and knowledge transfer skills of these graduates - many of them from abroad -- who are joining the international public health professional workforce. All our student evaluations of their project time with us have been very positive. |
| Description | Accelerator Award |
| Amount | £1,000,000 (GBP) |
| Organisation | British Heart Foundation (BHF) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2019 |
| End | 03/2024 |
| Description | Baily Thomas Foundation |
| Amount | £109,310 (GBP) |
| Organisation | Baily Thomas Charitable Fund |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | |
| Description | British Council Iran SEED funding |
| Amount | £5,000 (GBP) |
| Organisation | British Council |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2018 |
| Description | DETECT CANCER EARLY PROGRAMME |
| Amount | £80,000 (GBP) |
| Organisation | NHS Grampian |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2019 |
| Description | DEVELOPMENT TRUST |
| Amount | £5,000 (GBP) |
| Organisation | University of Aberdeen |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2017 |
| End | 12/2018 |
| Description | DOES PLACE OF RESIDENCE, DISTANCE AND TRAVELLING TIMES FROM HEALTH SERVICES WITHIN NORTH-EAST SCOTLAND INFLUENCE THE DIAGNOSTIC PATHWAY AND OUTCOMES FROM EIGHT COMMON CANCERS: ANALYSIS OF A LINKED DATASET |
| Amount | £137,669 (GBP) |
| Organisation | Cancer Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2016 |
| End | 10/2018 |
| Description | Dementia Global Challenge |
| Amount | £9,980 (GBP) |
| Organisation | Government of Scotland |
| Department | Scottish Funding Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2017 |
| End | 04/2018 |
| Description | EMA - Diclofenac pharmacovigilance Study |
| Amount | € 198,854 (EUR) |
| Organisation | European Medicines Agency |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2017 |
| End | 12/2018 |
| Description | EMA - Hydroxyzine pharmacovigilance study |
| Amount | € 199,384 (EUR) |
| Organisation | European Medicines Agency |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2018 |
| End | 12/2019 |
| Description | FAMILIAL HYPERCHOLESTEROLAEMIA |
| Amount | £840,509 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2020 |
| Description | Fast-tracking Health Innovation for NHS Scotland (MRC Confidence in Concept 2017) / R170262-104 |
| Amount | £37,063 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 02/2019 |
| Description | Global Challenges Research Fund Networking Grant |
| Amount | £24,956 (GBP) |
| Organisation | Academy of Medical Sciences (AMS) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2018 |
| End | 02/2019 |
| Description | MODELLING LIFE-COURSE DETERMINANTS OF COGNITIVE RESILIENCE USING ROUTINELY COLLECTED AND COHORT DATA. |
| Amount | £79,922 (GBP) |
| Organisation | Roland Sutton Academic Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 12/2016 |
| End | 11/2018 |
| Description | NHS GRAMPIAN PUBLIC HEALTH |
| Amount | £36,000 (GBP) |
| Organisation | NHS Grampian |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2017 |
| End | 10/2018 |
| Description | NHS Grampian R&D Pump Priming |
| Amount | £23,502 (GBP) |
| Organisation | NHS Grampian |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2018 |
| End | 02/2019 |
| Description | Roland Sutton Academic Trust |
| Amount | £40,599 (GBP) |
| Organisation | Roland Sutton Academic Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2018 |
| End | 12/2018 |
| Description | Rutherford Fund Fellowship at HDR UK: Risk Prediction in Pharmacoepidemiology |
| Amount | £300,466 (GBP) |
| Funding ID | MR/S003967/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 02/2018 |
| End | 02/2021 |
| Description | SPOR Innovative Clinical Trial Multi-Year Grant |
| Amount | $1,065,001 (CAD) |
| Organisation | Canadian Institutes of Health Research |
| Sector | Public |
| Country | Canada |
| Start | 06/2017 |
| End | 06/2021 |
| Description | SULSA Pooling Network |
| Amount | £4,850 (GBP) |
| Organisation | Scottish Universities Life Sciences Alliance |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 09/2017 |
| End | 09/2018 |
| Description | SYMPTOMS ASSOCIATED WITH CANCER [Prof P Hannford] |
| Amount | £415,272 (GBP) |
| Organisation | Cancer Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2017 |
| Description | Scottish School of Primary Care/Scottish Government |
| Amount | £120,000 (GBP) |
| Organisation | Government of Scotland |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2017 |
| End | 06/2018 |
| Description | Sustainable health interventions to tackle the emerging threat of antimicrobial resistance (Newton Funds Institutional Links) |
| Amount | £99,909 (GBP) |
| Organisation | British Council |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2018 |
| Description | Tackling multimorbidity at scale: Understanding disease clusters, determinants & biological pathways |
| Amount | £2,900,000 (GBP) |
| Funding ID | MR/V033867/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2021 |
| End | 03/2024 |
| Description | Wellcome Trust/University of Edinburgh ISSF3 Citizen's Jury on use of Guthrie Cards for Research Purposes |
| Amount | £40,000 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 04/2017 |
| End | 03/2018 |
| Title | Jisc Safe share |
| Description | The project will inform decisions on a potential Jisc national infrastructure for secure access to data for researchers across various academic disciplines. We are also piloting an authentication, authorisation and accounting infrastructure (AAAI) to demonstrate how our access and identity management services can be used to control access to sensitive data. Controlled access will further enhance the UK's research capacity in areas such as medical, clinical, health and the social sciences. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | -A coordinated partnership to help support UK research into disease, public health and social issues -Improved knowledge and a scalable solution providing benefits for other members of the community -Reduced duplication of effort and avoidance of potential competing, incompatible solutions in different research centres -Support for Research Councils UK (RCUK) and government strategies for research with sensitive data Swansea University and Cardiff University are the first to complete trialling the new infrastructure. |
| URL | https://www.jisc.ac.uk/rd/projects/safe-share |
| Title | The Scottish National Prescribing Information System (PIS) |
| Description | PIS provides summary information on reimbursed medicines from 1993, and individual prescribing and dispensing data since 2009 with the incorporation of the Community Health Index (CHI) number, |
| Type Of Material | Database/Collection of data |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | The data in PIS is used to enhance decisions about Scottish healthcare to improve the health of the people of Scotland. Several studies using PIS have already been published, for example: Use of antimicrobials and the risk of acquiring a healthcare associated infection Use of direct oral anticoagulants in patients with atrial fibrillation Factors influencing the prescribing of antidepressants The burden of irritable bowel syndrome Enhancing prescribing efficiency in Europe |
| URL | http://www.isdscotland.org/Products-and-Services/eDRIS/ |
| Description | 4C Cost-effectiveness Collaboration |
| Organisation | University of York |
| Department | Centre for Health Economics (CHE) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Expertise in Clinical Epidemiology Grant writing Wriring of journal articles |
| Collaborator Contribution | Health economics, evidence synthesis, decision modelling Grant writing Wriring of journal articles |
| Impact | To follow |
| Description | Akcea Therapeutics |
| Organisation | Akcea Therapeutics |
| Country | United States |
| Sector | Private |
| PI Contribution | TBC |
| Collaborator Contribution | TBC |
| Impact | Not yet. |
| Start Year | 2018 |
| Description | Alan Turing Institute- Synthetic Datasets |
| Organisation | Alan Turing Institute |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The Farr Network is contributing £50,000 to fund a joint research project with ATi. The first goal of the FASHIN project is to develop techniques that will provide more automation in running queries over The Farr Institute infrastructure. Secondly, it aims at reducing the amount of computational resources from The Farr Institute infrastructure required to run experiments, by shipping part of the execution to third-party infrastructure. A final goal is to identify subsets of the NHS data that could be made available to the public without compromising privacy. The algorithms that will be developed will be implemented in a prototype and demoed using data from NHS and query workloads from The Farr Institute. |
| Collaborator Contribution | The Alan Turing Institute will provide £50,000 and a research fellow to provide the computer science and mathematical expertise required for successful completion of the project. |
| Impact | n/a yet |
| Start Year | 2016 |
| Description | Astra Zeneca Cardiovascular Renal and Metabolic disorder (£0.5M) |
| Organisation | AstraZeneca |
| Department | Astra Zeneca |
| Country | United States |
| Sector | Private |
| PI Contribution | As PI we will determine aetiologic relations among these commonly occurring conditions and the impact this may have on the design and interpretation of major trials. |
| Collaborator Contribution | Collaboration between UCL and Astra Zeneca for a study on cardiovascular renal and metabolic disorders: 2019-2020, £0.5M |
| Impact | Meetings and engagement activities have taken place to maximse scientific and societal benefits. |
| Start Year | 2019 |
| Description | British Heart Foundation-HDR UK National Cardiovascular Data Science Centre |
| Organisation | British Heart Foundation (BHF) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | As member of Scientific Steering Group gave invited talk at workshop (phenomics) and advised on priorities |
| Collaborator Contribution | £10M |
| Impact | Academic, research and clinical outputs |
| Start Year | 2019 |
| Description | Computing eInfrastructure for genomic and imaging data (eMEDLAB) |
| Organisation | Medical Research Council (MRC) |
| Department | MRC Medical Bioinformatics Infrastructure Grant |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Co-PI |
| Collaborator Contribution | MRC £9M |
| Impact | academic, research and clinical outputs |
| Start Year | 2015 |
| Description | Digital Innovation Hub DATA CAN |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | I contributed to the engagement of industry partners including IQVIA (2019-) |
| Collaborator Contribution | IQVIA |
| Impact | As part of the Digital Innovation Hub process I contributed to the engagement of industry partners including IQVIA |
| Start Year | 2019 |
| Description | European Innovative Medicines Initiative-2 Horizon 2020 Big Data for Better Outcomes BigData@Heart |
| Organisation | European Commission |
| Department | Horizon 2020 |
| Country | European Union (EU) |
| Sector | Public |
| PI Contribution | I am the PI on this project and have provided scientific and management leadership |
| Collaborator Contribution | €9m H2020, €9m Industry |
| Impact | Academic and research outputs |
| Start Year | 2017 |
| Description | European leverage of health records and omics for drug development: Innovative Medicines Initiative 2 'Big Data for Better Outcomes' (Servier, Bayer, Novartis, Vifor, Actelion and Somalogic) |
| Organisation | Servier Laboratories |
| Country | France |
| Sector | Private |
| PI Contribution | I lead two work packages (informatics platform and omics enrichment) and sit on the five-member Executive of this 2017-2022 initiative seeking to tackle unmet need in heart failure, atrial fibrillation and acute coronary syndromes |
| Collaborator Contribution | European leverage of health records and omics for drug development: Innovative Medicines Initiative 2 'Big Data for Better Outcomes' (£9m from Horizon 2020 + £9m in kind from Servier, Bayer, Novartis, Vifor, Actelion and Somalogic). |
| Impact | TBC |
| Start Year | 2017 |
| Description | Farr Institute of Health Informatics Research |
| Organisation | Farr Institute of Health Informatics Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research |
| Collaborator Contribution | Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research |
| Impact | None at present |
| Start Year | 2013 |
| Description | Farr Institute of Health Informatics Research |
| Organisation | Farr Institute of Health Informatics Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research |
| Collaborator Contribution | Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research |
| Impact | None at present |
| Start Year | 2013 |
| Description | Farr Institute of Health Informatics Research |
| Organisation | Farr Institute of Health Informatics Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research |
| Collaborator Contribution | Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research |
| Impact | None at present |
| Start Year | 2013 |
| Description | Farr Institute of Health Informatics Research, London |
| Organisation | London School of Hygiene and Tropical Medicine (LSHTM) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development |
| Collaborator Contribution | Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development |
| Impact | to follow |
| Start Year | 2012 |
| Description | Farr Institute of Health Informatics Research, London |
| Organisation | Public Health England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development |
| Collaborator Contribution | Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development |
| Impact | to follow |
| Start Year | 2012 |
| Description | Farr Institute of Health Informatics Research, London |
| Organisation | Queen Mary University of London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development |
| Collaborator Contribution | Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development |
| Impact | to follow |
| Start Year | 2012 |
| Description | Farr Institute of Health Informatics Research, London |
| Organisation | UCL Partners |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development |
| Collaborator Contribution | Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development |
| Impact | to follow |
| Start Year | 2012 |
| Description | Health Data Research UK |
| Organisation | Health Data Research UK |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Inaugural Research Director |
| Collaborator Contribution | £120m 2018-2023, with responsibility for London £10m |
| Impact | Health Data Research in the UK |
| Start Year | 2018 |
| Description | HiGODS, Cross-cutting (Healthcare Informatics, Genomics/omics, Data Science) |
| Organisation | National Institute for Health Research |
| Department | UCLH/UCL Biomedical Research Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I have provided leadership contribution as Director, Healthcare Informatics, Genomics/omics, Data Science from 2016 |
| Collaborator Contribution | tbc |
| Impact | Meetings, Publications, Engagement Activities, Education, Policy, |
| Start Year | 2016 |
| Description | Kidney Disease @ Farr |
| Organisation | Farr Institute of Health Informatics Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Prof Corri Black established Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration to generate opportunities to share ideas and learning, and foster collaborations (http://www.farrinstitute.org/103_Research-Groups.html). So far there has been sharing of experience [8+ abstracts submitted to Farr International Conference], mapping of key datasets, and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. The ambition is to utilise the Farr Infrastructure to improve kidney patient care and outcomes through collaborative health informatics research. |
| Collaborator Contribution | Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration |
| Impact | So far there has been an invited Editorial published in the Journal of the American Society of Nephrology; sharing of experience [8+ abstracts submitted to Farr International Conference]; mapping of key datasets; and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. |
| Start Year | 2015 |
| Description | Kidney Disease @ Farr |
| Organisation | Farr Institute of Health Informatics Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Prof Corri Black established Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration to generate opportunities to share ideas and learning, and foster collaborations (http://www.farrinstitute.org/103_Research-Groups.html). So far there has been sharing of experience [8+ abstracts submitted to Farr International Conference], mapping of key datasets, and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. The ambition is to utilise the Farr Infrastructure to improve kidney patient care and outcomes through collaborative health informatics research. |
| Collaborator Contribution | Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration |
| Impact | So far there has been an invited Editorial published in the Journal of the American Society of Nephrology; sharing of experience [8+ abstracts submitted to Farr International Conference]; mapping of key datasets; and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. |
| Start Year | 2015 |
| Description | Kidney Disease @ Farr |
| Organisation | Farr Institute of Health Informatics Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Prof Corri Black established Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration to generate opportunities to share ideas and learning, and foster collaborations (http://www.farrinstitute.org/103_Research-Groups.html). So far there has been sharing of experience [8+ abstracts submitted to Farr International Conference], mapping of key datasets, and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. The ambition is to utilise the Farr Infrastructure to improve kidney patient care and outcomes through collaborative health informatics research. |
| Collaborator Contribution | Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration |
| Impact | So far there has been an invited Editorial published in the Journal of the American Society of Nephrology; sharing of experience [8+ abstracts submitted to Farr International Conference]; mapping of key datasets; and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. |
| Start Year | 2015 |
| Description | Kidney Disease @ Farr |
| Organisation | Farr Institute of Health Informatics Research |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Prof Corri Black established Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration to generate opportunities to share ideas and learning, and foster collaborations (http://www.farrinstitute.org/103_Research-Groups.html). So far there has been sharing of experience [8+ abstracts submitted to Farr International Conference], mapping of key datasets, and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. The ambition is to utilise the Farr Infrastructure to improve kidney patient care and outcomes through collaborative health informatics research. |
| Collaborator Contribution | Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration |
| Impact | So far there has been an invited Editorial published in the Journal of the American Society of Nephrology; sharing of experience [8+ abstracts submitted to Farr International Conference]; mapping of key datasets; and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. |
| Start Year | 2015 |
| Description | Kidney Disease @ Farr |
| Organisation | UK Renal Data Collaboration |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Prof Corri Black established Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration to generate opportunities to share ideas and learning, and foster collaborations (http://www.farrinstitute.org/103_Research-Groups.html). So far there has been sharing of experience [8+ abstracts submitted to Farr International Conference], mapping of key datasets, and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. The ambition is to utilise the Farr Infrastructure to improve kidney patient care and outcomes through collaborative health informatics research. |
| Collaborator Contribution | Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration |
| Impact | So far there has been an invited Editorial published in the Journal of the American Society of Nephrology; sharing of experience [8+ abstracts submitted to Farr International Conference]; mapping of key datasets; and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. |
| Start Year | 2015 |
| Description | Kidney Disease @ Farr |
| Organisation | UK and Scottish Renal Registries |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Prof Corri Black established Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration to generate opportunities to share ideas and learning, and foster collaborations (http://www.farrinstitute.org/103_Research-Groups.html). So far there has been sharing of experience [8+ abstracts submitted to Farr International Conference], mapping of key datasets, and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. The ambition is to utilise the Farr Infrastructure to improve kidney patient care and outcomes through collaborative health informatics research. |
| Collaborator Contribution | Kidney Disease@Farr to bring a multidisciplinary group of researchers from the 4 UK Farr Centres together with the UK and Scottish Renal Registries, Patient View and the UK Renal Data Collaboration |
| Impact | So far there has been an invited Editorial published in the Journal of the American Society of Nephrology; sharing of experience [8+ abstracts submitted to Farr International Conference]; mapping of key datasets; and a Frontiers meeting (Sept 2015) to scope the future research priorities and develop a collaborative application for programme funding. |
| Start Year | 2015 |
| Description | MQ Transforming mental health through research |
| Organisation | MQ Mental Health Research |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The Farr Institute have hosted and participated in one day conferences hosted in Edinburgh and Swansea to facilitate the use of linked administrative data in mental health research |
| Collaborator Contribution | Joint Meeting organisers |
| Impact | Meetings in Edinburgh http://www.farrinstitute.org/events-courses/event/mental-health-research-in-the-digital-age and Swansea. |
| Start Year | 2016 |
| Description | Memorandum of Understanding between The Farr Institute and ICES, Ontario |
| Organisation | Institute of Clinical and Evaluative Sciences (ICES) |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | The ICES-Farr MOU is a non-binding agreement that outlines the intent of the Farr Institute, Farr UK, and ICES to share information and work collaboratively, with a focus on five areas: • Capacity Building • Methodology, Data Science and Research • Public Engagement Research • Governance, Policies and Procedures • Research Exemplars |
| Collaborator Contribution | Working Group consisting of 10 members from across The Farr and ICES has been created to operationalize the MoU. Research outcomes and best practice in the theme of Public Engagement and Involvement in research have been shared. ICES invited to an international workshop on this subject organised by the Farr team for 27th April 2017. Existing research collaborations on the theme of maternal and child health between Astrid Guttmann (ICES) and Ruth Gilbert (The Farr) |
| Impact | None as yet |
| Start Year | 2016 |
| Description | NIHR UCLH/UCL Biomedical Research Centre (Informatics) |
| Organisation | National Institute for Health Research |
| Department | UCLH/UCL Biomedical Research Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I have been providing leadership vision and direction as the BRC Executive member since 2017 |
| Collaborator Contribution | BRC £110m, £3m for theme 2017-2022 |
| Impact | Publications, Meetings, Engagement Activities, Reports, Recommendation to policy |
| Start Year | 2017 |
| Description | OneLondon LHCRE |
| Organisation | NHS England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Academic and Research Leadership in bringing OnLondon LHCRE together with Luke Readman |
| Collaborator Contribution | £0.9M |
| Impact | Academic, research and clinical outputs |
| Start Year | 2017 |
| Description | PROGRESS (Prognosis Research Strategy) Partnership (2011-2016 MRC £800k |
| Organisation | Keele University |
| Department | Research Institute for Primary Care and Health Sciences |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We developed a series of articles which sets out a framework of prognosis research and makes recommendations. Apart from these core papers, we have promoted the PROGRESS framework of prognosis research in several auxiliary papers and research exemplars from our ongoing population research. We have collaborated with other partner for writing grants, and currently plan to apply for an MRC Methodology research programme grant to continue our collaborations for developing new methods in the prognosis research area. We have also organised several workshops and short courses and presented our partnership in various international meetings and collaborations. |
| Collaborator Contribution | Our partners have contributed in all areas of this partnership including writing and preparation of the core papers and research exemplars, promoting the the PROGRESS framework in various meetings and research collaborations, writing grants (both methodological and translational), and organising and presenting in workshops and short courses that we developed. |
| Impact | MRC grant G0902393 16 manuscripts published 2 International three-day courses (PROGRESS Summer Course in Prognosis Research 2013 & 2014) Several workshops about prognosis research, use of longitudinal data, clinical cohorts, Stratified Medicine, diagnosis versus prognosis Monthly teleconferences for discussing ideas and 3 overall PROGRESS Research meetings so far (last one Oct 2014 at Farr Institute, London) |
| Start Year | 2011 |
| Description | PROGRESS (Prognosis Research Strategy) Partnership (2011-2016 MRC £800k |
| Organisation | London School of Hygiene and Tropical Medicine (LSHTM) |
| Department | Faculty of Epidemiology and Population Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We developed a series of articles which sets out a framework of prognosis research and makes recommendations. Apart from these core papers, we have promoted the PROGRESS framework of prognosis research in several auxiliary papers and research exemplars from our ongoing population research. We have collaborated with other partner for writing grants, and currently plan to apply for an MRC Methodology research programme grant to continue our collaborations for developing new methods in the prognosis research area. We have also organised several workshops and short courses and presented our partnership in various international meetings and collaborations. |
| Collaborator Contribution | Our partners have contributed in all areas of this partnership including writing and preparation of the core papers and research exemplars, promoting the the PROGRESS framework in various meetings and research collaborations, writing grants (both methodological and translational), and organising and presenting in workshops and short courses that we developed. |
| Impact | MRC grant G0902393 16 manuscripts published 2 International three-day courses (PROGRESS Summer Course in Prognosis Research 2013 & 2014) Several workshops about prognosis research, use of longitudinal data, clinical cohorts, Stratified Medicine, diagnosis versus prognosis Monthly teleconferences for discussing ideas and 3 overall PROGRESS Research meetings so far (last one Oct 2014 at Farr Institute, London) |
| Start Year | 2011 |
| Description | PROGRESS (Prognosis Research Strategy) Partnership (2011-2016 MRC £800k |
| Organisation | Queen Mary University of London |
| Department | Barts and The London School of Medicine and Dentistry |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We developed a series of articles which sets out a framework of prognosis research and makes recommendations. Apart from these core papers, we have promoted the PROGRESS framework of prognosis research in several auxiliary papers and research exemplars from our ongoing population research. We have collaborated with other partner for writing grants, and currently plan to apply for an MRC Methodology research programme grant to continue our collaborations for developing new methods in the prognosis research area. We have also organised several workshops and short courses and presented our partnership in various international meetings and collaborations. |
| Collaborator Contribution | Our partners have contributed in all areas of this partnership including writing and preparation of the core papers and research exemplars, promoting the the PROGRESS framework in various meetings and research collaborations, writing grants (both methodological and translational), and organising and presenting in workshops and short courses that we developed. |
| Impact | MRC grant G0902393 16 manuscripts published 2 International three-day courses (PROGRESS Summer Course in Prognosis Research 2013 & 2014) Several workshops about prognosis research, use of longitudinal data, clinical cohorts, Stratified Medicine, diagnosis versus prognosis Monthly teleconferences for discussing ideas and 3 overall PROGRESS Research meetings so far (last one Oct 2014 at Farr Institute, London) |
| Start Year | 2011 |
| Description | PROGRESS (Prognosis Research Strategy) Partnership (2011-2016 MRC £800k |
| Organisation | University College London |
| Department | Research Department of Epidemiology and Public Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We developed a series of articles which sets out a framework of prognosis research and makes recommendations. Apart from these core papers, we have promoted the PROGRESS framework of prognosis research in several auxiliary papers and research exemplars from our ongoing population research. We have collaborated with other partner for writing grants, and currently plan to apply for an MRC Methodology research programme grant to continue our collaborations for developing new methods in the prognosis research area. We have also organised several workshops and short courses and presented our partnership in various international meetings and collaborations. |
| Collaborator Contribution | Our partners have contributed in all areas of this partnership including writing and preparation of the core papers and research exemplars, promoting the the PROGRESS framework in various meetings and research collaborations, writing grants (both methodological and translational), and organising and presenting in workshops and short courses that we developed. |
| Impact | MRC grant G0902393 16 manuscripts published 2 International three-day courses (PROGRESS Summer Course in Prognosis Research 2013 & 2014) Several workshops about prognosis research, use of longitudinal data, clinical cohorts, Stratified Medicine, diagnosis versus prognosis Monthly teleconferences for discussing ideas and 3 overall PROGRESS Research meetings so far (last one Oct 2014 at Farr Institute, London) |
| Start Year | 2011 |
| Description | PROGRESS (Prognosis Research Strategy) Partnership (2011-2016 MRC £800k |
| Organisation | University of Birmingham |
| Department | Department of Public Health, Epidemiology & Biostatistics (PHEB) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We developed a series of articles which sets out a framework of prognosis research and makes recommendations. Apart from these core papers, we have promoted the PROGRESS framework of prognosis research in several auxiliary papers and research exemplars from our ongoing population research. We have collaborated with other partner for writing grants, and currently plan to apply for an MRC Methodology research programme grant to continue our collaborations for developing new methods in the prognosis research area. We have also organised several workshops and short courses and presented our partnership in various international meetings and collaborations. |
| Collaborator Contribution | Our partners have contributed in all areas of this partnership including writing and preparation of the core papers and research exemplars, promoting the the PROGRESS framework in various meetings and research collaborations, writing grants (both methodological and translational), and organising and presenting in workshops and short courses that we developed. |
| Impact | MRC grant G0902393 16 manuscripts published 2 International three-day courses (PROGRESS Summer Course in Prognosis Research 2013 & 2014) Several workshops about prognosis research, use of longitudinal data, clinical cohorts, Stratified Medicine, diagnosis versus prognosis Monthly teleconferences for discussing ideas and 3 overall PROGRESS Research meetings so far (last one Oct 2014 at Farr Institute, London) |
| Start Year | 2011 |
| Description | PROGRESS (Prognosis Research Strategy) Partnership (2011-2016 MRC £800k |
| Organisation | University of Oxford |
| Department | Centre for Statistics in Medicine |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We developed a series of articles which sets out a framework of prognosis research and makes recommendations. Apart from these core papers, we have promoted the PROGRESS framework of prognosis research in several auxiliary papers and research exemplars from our ongoing population research. We have collaborated with other partner for writing grants, and currently plan to apply for an MRC Methodology research programme grant to continue our collaborations for developing new methods in the prognosis research area. We have also organised several workshops and short courses and presented our partnership in various international meetings and collaborations. |
| Collaborator Contribution | Our partners have contributed in all areas of this partnership including writing and preparation of the core papers and research exemplars, promoting the the PROGRESS framework in various meetings and research collaborations, writing grants (both methodological and translational), and organising and presenting in workshops and short courses that we developed. |
| Impact | MRC grant G0902393 16 manuscripts published 2 International three-day courses (PROGRESS Summer Course in Prognosis Research 2013 & 2014) Several workshops about prognosis research, use of longitudinal data, clinical cohorts, Stratified Medicine, diagnosis versus prognosis Monthly teleconferences for discussing ideas and 3 overall PROGRESS Research meetings so far (last one Oct 2014 at Farr Institute, London) |
| Start Year | 2011 |
| Description | UCL Institute of Health Informatics |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Inaugural Director |
| Collaborator Contribution | Current 5 year budget £33m |
| Impact | Academic and Research |
| Start Year | 2014 |
| Description | UK BIobank |
| Organisation | UK Biobank |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Cardiac outcomes working group |
| Collaborator Contribution | Using research data to validate electronic health record data |
| Impact | Papers in preparation |
| Start Year | 2010 |
| Description | Understanding Patient Data |
| Organisation | Wellcome Trust |
| Department | Understanding Patient Data |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Farr Network Communications manager is a member of the task force and has advised on the collation and data base to present case studies. Contributed the Farr collection of '100 Ways of using data to make life better' case studies. |
| Collaborator Contribution | Farr Institute will have access to materials and best practice collected through the task force. |
| Impact | A database of case studies contributed by research organisations and charities. |
| Start Year | 2016 |
| Description | 'Big Data/AI Symposium' at Pharmacology 2018, QEII Westminster |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Big data and dementia: joining up the dots' at DPUK Conference, British Medical Association, BMA House, London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Big data and the future of medicine: hope or hype' at event called 'Evolving Concepts in Anti-Thrombotic Treatment: Prevention, Prediction, Pharmacotherapy and Personalised Medicine', RCP |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Gearing an entire country for Heath Data Science Research' at University of Dundee Medical School Seminar, Ninewells Hospital, Dundee |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'HDR UK - a national programme of health data science' at Genome's BC Annual Genomics Forum 2018 UBC, Vancouver, Canada |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'HDR UK: the role of HDR UK and partnering with charities' at AMRC CEO Summit & Dinner, Wallacespace, London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Health and Data Science' at Asthma UK Data & Digital Frontiers Event, Friend's House, London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'How can NICE support clinicians and managers in preparing for the new wave of care?' at the NICE Annual Conference, Manchester |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Medicine in the Information Age' at Festival of Genomics, ExCEL Centre, London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Options and opportunities for Health Data Research UK', Faculty of Medicine's Annual Wade Lecture 2018, University of Southampton |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Options and opportunities for Health Data Science' at the Wellcome Genome Campus Distinguished Lecture, Cambridge |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'QMUL and KCL Life Sciences, East London, Communities and Collaboration' at East London Genes & Health Life Science Industry Workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | ADEGS annual conference on 'Academic Primary Care in the Information Age', University of St Andrews |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | APPG Medical Research event July 12th |
| 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 | Forum to allow charities and researchers to meet politicians to explain benefits of using administrative data in health and health care research. After event follow up communications providing papers and policy documents to MPs and members of house of Lrds we met at the event. Jo Churchill MP has adopted #datasaveslives campaign to support her private members bill. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Article on the daily mail on published research |
| 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 | Daily mail newspaper report on research: "Weight gain risk is at its greatest from the ages of 18 to 34... and the chances of becoming obese DECREASE in middle, study suggests" |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.dailymail.co.uk/health/article-9953055/Weight-gain-risk-greatest-ages-18-34-study-sugges... |
| Description | Attitudes to data linkage in the UK and Sweden |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | This was a Seminar given at the Higher Series of the Centre for Research Ethics & Bioethics (CRB) at the University of Uppsala, Sweden |
| Year(s) Of Engagement Activity | 2017 |
| Description | Cambridge Bradford Hill Series Seminar, Cambridge |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | Drawing on data to transform lives: improving services for vulnerable adolescents |
| 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 | Members of the Farr Institute communications attended to talk about The Farr research and to promote the '100 Ways' case study project |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.eventbrite.co.uk/e/drawing-on-data-to-transform-lives-improving-services-for-adolescents... |
| Description | Farr institute Annual PhD Symposium |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | 22 PhD Students attended a 2 day symposium, June 2016. Day 1: Students presented their research Day 2: Worked in small groups of mixed-disciplines.Set problems by guest organisations and asked to provide solutions to the problems. Guest organisations were: Cerner; NHS choices; Public Health England; Patients Know Best; AstraZeneca. Some of the organisations asked to continue working with their student groups. Students improved their presentation skills and gained valuable feedback on their projects. New contacts made. |
| Year(s) Of Engagement Activity | 2008,2016 |
| Description | Innovative Governance Symposium at International Association of Bioethics World Congress June 2016 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Symposium on 'Governance Interoperability in Health Research Regulation'. Series of talks by International leaders. A report is being written. |
| Year(s) Of Engagement Activity | 2016 |
| Description | International Population Data Linkage Conference 2016 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Farr joined with IPDLN and ADRN to host international conference on data linkage based research. Created new collaborations, disseminated best practice. David Ford, Deputy Director Farr CIPHER hosted the conference and chaired the scientific programme committee. Catharine Goddard, Farr Network manger, led the abstract review and submission process. David Ford, Deputy Director Farr CIPHER hosted the conference and chaired the international scientific committee (ISC). Farr investigators Athanasios Anastasiou, Chris Dibben, Goran Nenadic and Tjeerd van Staa members of the ISC. |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.ipdlnconference2016.org/ |
| Description | Medical Schools Council, Ditchley |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | Mhairi Aitken, 26th April 2017, " Discrete choice experiment on commercial use of health data" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation given at the Informatics for Health Conference, Manchester UK |
| Year(s) Of Engagement Activity | 2017 |
| Description | Multiple media mentions of excess cancer deaths in COVID-19 study |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Our work on excess cancer deaths in COVID-19 has been in the media continuously since March, now published in Lancet, and has been included in SAGE priorities and informed several policy changes including the early focus on 'indirect' deaths, the weekly reporting of excess deaths by the Office for National Statistics, and approaches to understanding vulnerable patients. A number of outlets featured the study outcomes including BBC Panorama's 'Britain's Cancer Crisis', the Independent's 'Cancer is the other 'big C' we can't afford to push aside' and Macmillian Cancer Support's 'The Forgotten 'C'? The impact of Covid-19 on cancer care'. https://www.bbc.co.uk/programmes/m000kqzv https://www.independent.co.uk/voices/coronavirus-nhs-cancer-testing-death-toll-illness-symptoms-check-gp-a9492161.html https://www.macmillan.org.uk/assets/forgotten-c-impact-of-covid-19-on-cancer-care.pdf |
| Year(s) Of Engagement Activity | 2020 |
| Description | Open Data and the importance of Confidentiality, Control and Public Benefits |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | This was the closing Keynote speech at the University of Edinburgh's Dealing with Data conference |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://media.ed.ac.uk/media/0_7172qesr |
| Description | OptumLabs event - data infrastructure seminar at Royal Society of Medicine, London |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | OurRisk.CoV risk calculator |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Our OurRisk.CoV risk calculator (available here: http://covid19-phenomics.org/PrototypeOurRiskCoV.html) has had 1.3 million pageviews from 636K users across the world (e.g. 21% of users from the United States). The risk calculator is also on the BHF website (https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/coronavirus-and-your-health/how-to-find-out-your-risk-when-it-comes-to-coronavirus) |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://covid19-phenomics.org/PrototypeOurRiskCoV.html |
| Description | Patient Perspective - The Patient and Public Voice - using big data for public benefit |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was a keynote lecture as part of The International Society for Pharmacoepidemiology EuroDurg Conference 2017 |
| Year(s) Of Engagement Activity | 2017 |
| URL | http://eurodurg2017.net/scientific-programme/ |
| Description | PhD Summer School |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | The Farr Institute Capacity Building WG organised a summer school for PhD students and early career researchers as part of the IPDLN conference 2016. The students learnt 1) methodology around using open and non-standard data ( e.g. from wearables and apps) 2) communicating research to the public through the media. Student feedback that they had a better understanding of both topics and would be able to apply to their research. |
| Year(s) Of Engagement Activity | 2014,2016 |
| Description | Public benefits: a central justification and problematic dimension of health informatics |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation at Informatics for Health Conference, Manchester UK |
| Year(s) Of Engagement Activity | 2017 |
| Description | Public engagement with data science: Reflections on past experiences and future approaches. CRISP Being digital: Digital technologies and citizen-centred approaches to participation, surveillance and privacy |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | This was a workshop initiated by CRISP Being to discuss digital technologies and citizen-centred approaches to participation, surveillance and privacy |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.stir.ac.uk/management/news/events/2017/crispbeingdigitalworkshop/ |
| Description | Talk given to HDR UK North and NICE Collaborative Workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited to give talk titled ' A prognostic atlas for clinical practice guidelines' given to researchers, academics and other audience at the workshop. |
| Year(s) Of Engagement Activity | 2021 |
| Description | The Peter Tizard lecture on 'Data science - the cornerstone of medical discovery', at Trinity Biomedical Science Institute, Trinity College Dublin |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | UK Biobank Scientific Conference, QEII Conference Centre |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | https://www.ed.ac.uk/centre-genomic-medicine/news-events/news-2017/debate-genome-screening-pandoras-box |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | This was presented as part of a University of Edinburgh Medical Debate: The motion of the debate was "This house believes that the UK should have whole genome screening". Professor Graeme Laurie, and Professor Sarah Cunningham-Burley, both Farr Scotland argued against the motion. |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.ed.ac.uk/centre-genomic-medicine/news-events/news-2017/debate-genome-screening-pandoras-... |