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.

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.

Publications

10 25 50

 
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 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 advisory committee
 
Description Chair, International Scientific Advisory Committee, OPTIMISE Project (CIHR Grant awarded to Prof Laura Rosella et al. to improve the use of routinely collected population-based data for health system and policy action), CANADA
Geographic Reach North America 
Policy Influence Type Participation in a advisory committee
URL http://www.dlsph.utoronto.ca/faculty-profile/rosella-laura-c/
 
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 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 Gave evidence to a government 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 advisory committee
 
Description Member, International Advisory Board, School of Population and Global Health, McGill University, Montreal, CANADA
Geographic Reach North America 
Policy Influence Type Participation in a advisory committee
URL https://www.mcgill.ca/spgh/
 
Description Member, Scientific Advisory Group, Better Start Bradford Innovation Hub
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL https://borninbradford.nhs.uk/research/grants/better-start-bradford-innovation-hub/
 
Description National Data Guardian REVIEW OF DATA SECURITY, CONSENT AND OPT-OUTS
Geographic Reach National 
Policy Influence Type Participation in a national consultation
URL https://www.gov.uk/government/publications/review-of-data-security-consent-and-opt-outs
 
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 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 04/2017 
End 03/2018
 
Description DETECT CANCER EARLY PROGRAMME
Amount £80,000 (GBP)
Organisation NHS Grampian 
Sector Public
Country United Kingdom
Start 04/2017 
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 05/2017 
End 04/2018
 
Description EMA - Diclofenac pharmacovigilance Study
Amount € 198,854 (EUR)
Organisation European Medicines Agency 
Sector Public
Country United Kingdom
Start 07/2017 
End 12/2018
 
Description EMA - Hydroxyzine pharmacovigilance study
Amount € 199,384 (EUR)
Organisation European Medicines Agency 
Sector Public
Country United Kingdom
Start 04/2018 
End 12/2019
 
Description FAMILIAL HYPERCHOLESTEROLAEMIA
Amount £840,509 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 04/2017 
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 Academic/University
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)
Organisation Medical Research Council (MRC) 
Sector Academic/University
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 07/2017 
End 06/2021
 
Description SULSA Pooling Network
Amount £4,850 (GBP)
Organisation Scottish Universities Life Sciences Alliance 
Sector Academic/University
Country United Kingdom
Start 10/2017 
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 10/2017 
 
Description Scottish School of Primary Care/Scottish Government
Amount £120,000 (GBP)
Organisation Government of Scotland 
Sector Public
Country United Kingdom
Start 07/2017 
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 04/2017 
End 03/2018
 
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 05/2017 
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 Alan Turing Institute- Synthetic Datasets 
Organisation Alan Turing Institute
Country Unknown 
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 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 Transforming Mental Health
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 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 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 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 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 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-...