UKDP: Integrated DEmentiA research environment (IDEA)

Lead Research Organisation: Swansea University
Department Name: Institute of Life Science Medical School

Abstract

The UK Dementias Platform (UKDP) is a radically new approach to dementias research. It brings together data from
around 2,000,000 study participants from 22 cohorts to try and discover the causes of dementia and to find out ways of
slowing it down. The platform has been funded to the level of £12M.
In this proposal we want to improve UK infrastructure for dementia research so that the most can be made of the
opportunity provided by UKDP. We wan to improve the infrastructure by buying important pieces of equipment that will put
the UK at the forefront of dementia research worldwide and by establishing networks of scientists who will work together to
make best use of the equipment.
The three themes of the proposal are imaging, informatics and stem cells.
For imaging we want to establish a network of PET/MR scanning facilities across the UK so that the molecular processes
going on inside the brain that cause dementia can be studied.
For informatics we want to be bring together bas many different types of data as possible and make it easy as possible for
scientists to use them
For stem cells we want to take cells form adults with and without dementia to find out how cells change as the dementias
process begins and progresses.
We believe these proposals will raise standards, reduce costs, and deliver innovative and coordinated research, making
the UK an internationally unique place to study dementia.

Technical Summary

Our objective is to achieve a step-change in UK dementia research capacity through establishing national networks of
existing and emerging centres of excellence in imaging, informatics and cell-biology.
The UK Dementias Platform (UKDP) is a radically new approach to dementias research, providing a highly efficient and
cost-effective translational pipeline from discovery through to early phase trials. UKDP will create closer synergy between
epidemiology and experimental medicine with the re-purposing of epidemiologic cohorts for trials readiness. The size and
depth of phenotyping available to UKDP will deliver a step-change in the complexity and granularity of dementia related
hypothesis testing and accelerate compound development.
Proposed here is an infrastructure of investment and collaboration. Underpinning UKDP is a critical mass of researchers
and resources that will work together to encourage, facilitate, and develop a fully integrated dementia dedicated UK
research environment. This will raise standards, reduce costs, and deliver innovative and coordinated research, to make
the UK an internationally unique research environment. Through its partnership with major academic centres and industry,
UKDP is well positioned to achieve this goal.
Building on the recent MRC investment in UKDP, we propose here to renew and extend the UKDP integrative research
environment with an advanced molecular imaging network strategically located to exploit UKDP cohorts. Also proposed is
an integrated informatics environment to facilitate the location of and access to both data and bio-samples. The third
proposal is for a stem-cells network to promote the use of this important and emerging technology. Each of these elements
adds value to existing infrastructure investments and fills significant gaps in the UK research landscape.

Planned Impact

The current proposal in in support of the UKDP and will become part of the the UKDP impact strategy.
In summary, the UKDP strategy to deliver pact is to develop networks of partnership to actively consult engage the UK
academic community in relation to dementia research focussing on the direction,
technologies and collaborations of the UKDP and the wider UK national infrastructure.
Our aim is to:

1) promote the best possible science
2) create momentum in dementias research by being inclusive of, and synergistic with, other initiatives.
Partnership discussions with industry are already underway with exchanges of ides, interests and needs between
academic and industry stakeholders. Industry have identified their need for access to conversion (early MVI to dementia
cohorts and for experimental medicine studies to conform to regulatory requirements.
We remain committed to raising the profile of contemporary debate about dementia and its treatment. We wish to
encourage a culture of commitment to solving this problem. By increasing awareness at all levels of society we intend to
leverage resources for the platform and for dementia research in general, to increase awareness of the need for earlier
interventions and better targeted treatment in general by health service providers and the public alike.
Engagement with the general public and with patients and carers is a very important part of our mission. This serves not
only to communicate our research findings and their relevance but also to address such issues as stigma in society and the
research culture in the NHS in relation to dementia and older people. In addition to using the platform web-site to
communicate to the general public, we will also liaise with charities and advocate groups such as Age UK and the
Alzheimer's Society to promote our work and findings and to engage them in shaping the work programme.
In addition we will have a dedicated free-phone number available 6 days a week and a communications officer at 50% FTE
over 5 years whose responsibility is to develop and implement a communications and public engagement strategy.

Publications

10 25 50
publication icon
Wilkinson T (2019) 054 Dementia mortality in wales: a population-based e-cohort in Journal of Neurology, Neurosurgery & Psychiatry

publication icon
Murtagh MJ (2016) International Data Sharing in Practice: New Technologies Meet Old Governance. in Biopreservation and biobanking

 
Description Airwave Health Monitoring Study (AHMS)
Amount £23,908 (GBP)
Funding ID WPEA_P72447 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 07/2020 
End 06/2023
 
Description HDR UK Multiomics
Amount £77,625 (GBP)
Funding ID CFC0107 
Organisation Health Data Research UK 
Sector Private
Country United Kingdom
Start 04/2020 
End 03/2022
 
Description UK MEDical BIOinformatics partnership - aggregation, integration, visualisation and analysis of large, complex data (UK MED-BIO).
Amount £5,941,410 (GBP)
Funding ID MR/L01632X/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 06/2014 
End 05/2019
 
Title DPUK Data Portal Datathon Virtual Desktop 
Description Bespoke virtual desktop infrastructure for DPUK Datathons - comprising of dedicated 32GB RAM/4 CPU machines supporting up to 60 concurrent users. Pre-loaded with software such as Stata 16, SPSS, SAS, R, Python (Anaconda), PyCharm, Spyder, Jupyter Notebook, Eclipse, SQL Server Management Studio, Matlab, and Office. 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? Yes  
Impact The dedicated Datathon desktop has allowed us to run 4 DPUK Datathon events across the UK, which have had an international audience of over 150 researchers cumulatively. 
URL https://portal.dementiasplatform.uk/
 
Title SAIL Dementia eCohort (SAILDeC) 
Description DPUK has funded the creation of the SAIL (Secure Anonymised Information Linkage) Databank Dementia eCohort, known as SAILDeC. A team from the University of Edinburgh, led by Dr Tim Wilkinson and Dr Christian Schnier, have developed a research cohort from routine healthcare records found in the SAIL Databank, a research databank containing routine healthcare and adminstrative records for the Welsh populace. The eCohort is derived from 1.2 million individuals who met the inclusion criteria, and of those, ~130,000 dementia cases throughout the data coverage have been identified. This represents the first UK research-ready disease cohort derived solely from routine healthcare records, which can be analysed in its own right or combined with other rich sources of cohort and routine data. It is thought that the technical components of creating the cohort, in terms of coding and initial analysis, could be the lead for future eCohort generation in other disease fields. These eCohorts could then be analysed within their specific area of science, or combined for a rich multi-morbidity database. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? Yes  
Impact This is the first disease-specific eCohort of patients to be created from ~20 years of routine healthcare data. It provides a rich dementia-specific resource for episodic progression of patients with initial MCI through to mortality, and every stage in between. The process of creating the cohort can inform the creation of such cohorts from the SAIL source and other routine clinical data sources in many disease areas. 
 
Title Dementias Platform UK Data Portal 
Description The DPUK Data Portal is a platform to allow the ingress of data from cohort studies and real-world evidence data from across the UK and internationally. The Portal allows access, subject to data provider approval, to said data via an integrated application system, and provides an analysis environment on remote desktop to allow distributed team science from anywhere in the world. The Portal environment comprises of front end user tools, a virtual desktop infrastructure for data analysis, a security system for permissions management and data upload, and an underlying architecture of substantial storage and applications to support the data needs. 
Type Of Technology Webtool/Application 
Year Produced 2017 
Impact To date (early 2019) we have had ~80 applications for cohort data via our new processes. Of these, 50 have been approved and at least 25 studies are underway with analysis of their approved cohort data. All of these studies are contributing to the dementia research community with a mixture of traditional epidemiological hypotheses, methodology validation, complex machine learning, and statistical modelling all being achieved in the Portal. Website: https://portal.dementiasplatform.uk 
 
Title UKSeRP (UK Secure eResearch Platform) 
Description UKSeRP is a secure data management and analysis platform created through MRC's capital investment in the Farr Institute. It is an integrated suite of hardware and software tools that enables uses to upload and remotely manage their data and make the data available for analysis to distributed research teams. UKSeRP instances have been created for the MRC Dementias Platform UK, UK Biobank outcome adjudication group, ALSPAC, linked Millennium Cohort Data and the Multiple Sclerosis Register. 
Type Of Technology Webtool/Application 
Year Produced 2014 
Impact UKSeRP supports the development and implementation of distributed multi-disciplinary UK Team Science in providing access to multi-modal multi-cohort data. 
 
Description AAIC 2017 - Dementias Platform UK Showcase presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A talk from several DPUK work packages on the component products and research ongoing as part of the Data Portal setup
Year(s) Of Engagement Activity 2017
URL https://portal.dementiasplatform.uk
 
Description Administrative Data Research Network Conference - Belfast, June 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A presentation on the DPUK Data Portal and the potential applications of Administrative Data and Linked Health Data
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description Alzheimer's Research UK Conference - London - Poster Presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster on the Data Portal was presented and substantial interest developed over the day of its presentation.
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description Anti-Microbial Resistance Databank collaboration meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact An invite to present the DPUK Data Portal as an exemplar use case of the UK Secure eResearch Platform, to a group interested in using the infrastructure.
Year(s) Of Engagement Activity 2017
URL https://portal.dementiasplatform.uk
 
Description Big Data - next big thing: evaluation. Presentation to 1st NHS Wales Digital Health and Care Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Invited talk on the future of health informatics and 'Big Data' for the NHS. The purpose was to demonstrate what was already happening, how evaluations of numerous interventions were being carried out using multi-sectoral data linkage, how this was also supporting DiscoverY Science and the potential for these activities to grow into normal practice for the NHS and wider public services.
Year(s) Of Engagement Activity 2017
 
Description Brains for Dementia Research Study Day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation on the use of BDR data on the DPUK Data Portal to the cohort study panel
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description DPUK Annual Conference - Data Portal presentation session 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation on the DPUK Data Portal at the DPUK Annual Conference
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description DPUK Cohort Collaboration Meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact DPUK commissioned a cohort collaboration meeting to allow its network to facilitate cohort to cohort projects and to gain feedback on how DPUK can best support the science being already performed by cohorts and how to integrate this into the Data Portal.
Year(s) Of Engagement Activity 2016
 
Description DPUK Cohort Seminar 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A cohort working group convened by DPUK to gather cohort staff, including principal investigator's, data managers and researchers, to disseminate information about DPUK's various work packages. Main involvement surrounded the ongoing build and operation of the DPUK Data Portal and Informatics Network.
Year(s) Of Engagement Activity 2016
 
Description DPUK Cohort Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A meeting to discuss plans, Portal and general DPUK next steps, and gain advice from an expert panel of DPUK cohorts
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description DPUK Data Portal Live Demonstration 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A live demonstration of the operational DPUK Data Portal was given by Chris Orton, Data Project Manager for DPUK at Swansea University, at the DPUK Annual Scientific Meeting at the Royal College of Obstetricians and Gynaecologists, on 4th May 2017. The demonstration showed a live log-in of the system, including the security measures and services available to researchers.
Year(s) Of Engagement Activity 2017
URL https://portal.dementiasplatform.uk
 
Description DPUK Data Portal demonstration at the EMIF/DPUK Joint Conference, February 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The DPUK Data Portal was demonstrated to researchers and policy makers from both DPUK and EMIF at the EMIF/DPUK Joint Conference in Manchester on 23rd February 2017. The session was designed to give a live run-through of the Portal, its tools, and its analytic potential, which inspired questions and interaction from the research community present.
Year(s) Of Engagement Activity 2017
 
Description DPUK Exeter Datathon 
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 DPUK Exeter Datathon held at the University of Exeter.
22 researchers convened to focus on machine learning and AI from two cohort datasets (ELSA, NACC), and used the DPUK Data Portal datathon virtual desktop to investigate this data and test methodology.
Year(s) Of Engagement Activity 2019
URL http://www.exeter.ac.uk/news/events/details/index.php?event=9294
 
Description DPUK Infrastructure Presentation at the EMIF DPUK Joint Conference, February 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Simon Thompson, Head of IT for Swansea University Medical School, gave a talk on DPUK infrastructure at the EMIF/DPUK Joint Conference in Manchester on 23rd February 2017. The presentation outlined the completion of the infrastructure build and move to live operation of the DPUK Data Portal which had begun to provision data.
Year(s) Of Engagement Activity 2017
 
Description DPUK Presentation at the Internation Population Data Linkage Network Conference, Swansea, August 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A presentation was given on DPUK infrastructure and informatics work at the IPDLN Conference, hosted at Swansea University in August 2016. The presentation was in front of an audience of international researchers and policy makers and explained the UKSeRP architecture used by DPUK and the plans to integrate cohort data and enhance modality knowledge.
Year(s) Of Engagement Activity 2016
 
Description DPUK Swansea Datathon 
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 DPUK Swansea Datathon held at Swansea University - October 2019.
25 researchers convened to investigate the co-morbidity of dementia across 4 DPUK cohorts' data - BRACE, CaPS, ELSA, Generation Scotland.
The event consisted of talks on each of the cohorts and analysis sessions to explore and investigate data across teams. Findings were reported in a final presentation session on the third day.
Year(s) Of Engagement Activity 2019
URL https://popdatasci.swan.ac.uk/population-data-science-at-swansea-university-dpuk-datathon/
 
Description DPUK Turing Institute Datathon 
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 A DPUK Datathon held at the Alan Turing Institute in London.
The event comprised 42 researchers using the DPUK Data Portal datathon virtual desktop to investigate data from the Deep and Frequent Phenotyping study. The focus of the Datathon was on machine learning and artificial intelligence, and made use of phenotypic and imaging data from the DFP pilot.
Year(s) Of Engagement Activity 2018
URL https://www.turing.ac.uk/events/innovative-data-science-alzheimers-research
 
Description DPUK UEA Datathon 
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 DPUK Datathon held at University of East Anglia.
60 researchers convened to explore and investigate data from 3 DPUK cohorts (ELSA, CaPS, DFP), using the DPUK Data Portal datathon virtual desktop.
Year(s) Of Engagement Activity 2019
URL https://www.dementiasplatform.uk/upcoming-events/dpuk-datathon-2013-uea
 
Description Data Linkage to Cohort Studies. Presentation to CLOSER research group, London - 3/11/14 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Data Linkage to Cohort Studies. Presentation to CLOSER research group, London
Year(s) Of Engagement Activity 2014
 
Description Data Linkage: an essential tool for efficient observational and interventional research and service delivery. Keynote address at Public Health Science Conference, Cardiff - 27/11/16 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Data Linkage: an essential tool for efficient observational and interventional research and service delivery. Keynote address at Public Health Science Conference, Cardiff
Year(s) Of Engagement Activity 2016
 
Description Data science: solving the grand challenge of interdisciplinary working for UK biomedical, clinical and epidemiological sciences. Invited presentation at UK Roadmap for Biomedical Metabolic Phenotyping retreat, Wellcome Genome Campus, Hinxton - 11/10/16 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Data science: solving the grand challenge of interdisciplinary working for UK biomedical, clinical and epidemiological sciences. Invited presentation at UK Roadmap for Biomedical Metabolic Phenotyping retreat, Wellcome Genome Campus, Hinxton
Year(s) Of Engagement Activity 2016
 
Description Dementias Research Platform UK. Presentation to Farr Institute International Advisory Board - 15/12/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dementias Research Platform UK. Presentation to Farr Institute International Advisory Board, London
Year(s) Of Engagement Activity 2015
 
Description Developments in data sharing technologies at Farr centre in Swansea: UKSeRP and NRDAs. MRC Stratified Medicine consortia, London - 24/11/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Developments in data sharing technologies at Farr centre in Swansea: UKSeRP and NRDAs. MRC Stratified Medicine consortia, London
Year(s) Of Engagement Activity 2015
 
Description EU Joint Programme - Neurodegenerative Disease Research, ADDITION Consortium Kick-off meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Discussion with the initial working group of the ADDITION Consortium, regarding the DPUK Data Portal supporting the research analysis.
Year(s) Of Engagement Activity 2019
URL https://portal.dementiasplatform.uk
 
Description Ethical Risk Assessment in Biomedical Big Data - Protecting privacy through design 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Protecting privacy through design
Year(s) Of Engagement Activity 2016
 
Description Farr Institute Cancer Frontiers Meeting, London - 9/12/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Farr Institute Cancer Frontiers Meeting, London
Plans made for further meetings of the group
Year(s) Of Engagement Activity 2015
 
Description Farr Institute: Distributed multi-disciplinary team science in action. International Population Data Linkage Network Conference - 24/8/16 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Farr Institute: Distributed multi-disciplinary team science in action. International Population Data Linkage Network Conference, Swansea
Year(s) Of Engagement Activity 2016
 
Description Farr and the vision for data: examples of evaluating complex interventions. MQ Transforming Mental Health meeting - 03/09/16 
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 Farr and the vision for data: examples of evaluating complex interventions. MQ Transforming Mental Health meeting
Year(s) Of Engagement Activity 2016
 
Description Geospatial 'Big Data' and Privacy Protection. Association of Geographic Information Big Data and You conference - 8/10/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Geospatial 'Big Data' and Privacy Protection. Association of Geographic Information Big Data and You conference, Cardiff
Year(s) Of Engagement Activity 2015
 
Description Global Alzheimer's Disease Data Iniative - Interoperability Working Group, Toronto, December 2018 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presence and interaction at the 1st Global AD Data Initiative Interoperability Working Group - discussing integrating worldwide AD data platforms.
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description Global Alzheimer's Disease Data Iniative - Interoperability Working Group, Washington, March 2019 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Attendance, presentation, and interaction at the 2nd Global AD Data Initiative Interoperability Working Group. Presentation of project plans and ideas to stakeholders, and involvement on debate and discussion surrounding development of initiatives.
Year(s) Of Engagement Activity 2019
URL https://portal.dementiasplatform.uk
 
Description Health Data Research UK Site Meeting - January 2019 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Presentation and discussion of the DPUK Data Portal as an affiliate partner of Health Data Research UK.
Year(s) Of Engagement Activity 2019
URL https://portal.dementiasplatform.uk
 
Description IASIS: Big Data for Precision Medicine, Plenary Meeting, March 2019 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Attendance and interaction at the IASIS plenary meeting. DPUK is supporting IASIS on data access and to discuss integration of the IASIS tools to the DPUK Data Portal. The tools comprise discovery tools, data subset selection mechanisms and data analysis pipelines. The two pilot use cases for the IASIS tools are analysis of dementia outcomes, and lung cancer.
Year(s) Of Engagement Activity 2019
URL http://project-iasis.eu/
 
Description Informatics and Population Health Sciences. Presentation to MRC Population Health Strategy Board, London - 19/10/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Informatics and Population Health Sciences. Presentation to MRC Population Health Strategy Board, London
Year(s) Of Engagement Activity 2015
 
Description Informatics, epidemiology and interventions: Network working and coordination of data resources. MRC Neurodevelopmental Disorders Research Network, London - 23/11/15 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Informatics, epidemiology and interventions: Network working and coordination of data resources. MRC Neurodevelopmental Disorders Research Network, London
Decision made that a Neurodevelopmental Disorders Research Network would require a data platform similar to the Dementias Research Platform UK
Year(s) Of Engagement Activity 2015
 
Description International Population Data Linkage Network Conference - Banff, Canada, September 2018 - Data Services presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Laura North presented on the data curation and preparation services offered by DPUK to enhance cohort data usability and integrity.
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description International Population Data Linkage Network Conference - Banff, Canada, September 2018, Data Portal presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Infrastructure presentation on technical and data integration of the DPUK Data Portal
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description Launch of the MRC UK Dementias Platform, Royal Society, London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact More than 200 people attended the conference launch. I presented as leader of the Informatics Platform Work Package in the morning and the interactive discussion with industry in the afternoon

a number of contacts were made with industry colleagues with plans for follow up meetings
Year(s) Of Engagement Activity 2014
URL http://www.mrc.ac.uk/research/facilities/dementias-research-platform-uk/
 
Description MED-BIO: Links to Farr Institute and CIPHER. Presentation to MED-BIO MRC bioinformatics centre, London - 6/7/16 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Policymakers/politicians
Results and Impact MED-BIO: Links to Farr Institute and CIPHER. Presentation to MED-BIO MRC bioinformatics centre, London
Year(s) Of Engagement Activity 2016
 
Description Measuring patient outcomes and reducing population impact. Presentation to South Wales Trauma Collaborative - 3/6/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Measuring patient outcomes and reducing population impact. Presentation to South Wales Trauma Collaborative
Year(s) Of Engagement Activity 2015
 
Description Mental Health Data Science Meeting (event part-funded by Farr Institute CIPHER) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Assessment of complex interventions using routine data
Year(s) Of Engagement Activity 2016
 
Description NHS Digital Collaboration Meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Meeting with NHS Digital to discuss infrastructure solutions for DPUK cohorts, and wider onward sharing to the UKSeRP infrastructure tenants.
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description National Centre for Population Health and Wellbeing Research, Health and Care Research Wales launch - 14/5/15 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact National Centre for Population Health and Wellbeing Research, Health and Care Research Wales launch
Year(s) Of Engagement Activity 2015
 
Description Nature Neuroscience Interoperability Meeting, Toronto, December 2018 - Data Portal presentation and panel appearance 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A technical presentation on the DPUK Data Portal, followed by an appearance on the data platform panel, answering policy and practice questions from an expert meeting audience
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description Operating at Scale Throughout the UK. Farr Institute Industrial Forum in association with Genesis 2015 conference, London - 10/12/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Operating at Scale Throughout the UK. Farr Institute Industrial Forum in association with Genesis 2015 conference, London
Year(s) Of Engagement Activity 2015
 
Description Platforms and Governance. Progress in setting up the environment for delivery: trusted research environments for federated, scalable research. Farr Institute International Advisory Board, London - 1/12/15 
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 Platforms and Governance. Progress in setting up the environment for delivery: trusted research environments for federated, scalable research. Farr Institute International Advisory Board, London
Year(s) Of Engagement Activity 2015
 
Description Poster presentation at DPUK Annual Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Outline presentation of work package 2 of DPUK, the informatics stream, at the time focusing on the build and purpose of the DPUK Data Portal. The poster featured a description of the envisaged tools, data management and planned activity for the coming year.
Year(s) Of Engagement Activity 2016
 
Description Presentation at Academy of Medical Sciences, Data in Safe Havens meeting, London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation title - Farr Institute: Safe Havens

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Year(s) Of Engagement Activity 2014
 
Description Presentation at Database Resources for Large-Scale and Complex Data workshop, Engineers' House, Bristol, 21st June 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Chris Orton presented on the DPUK use case of UKSeRP and the enhancement of cohort data and research that this brings to the epidemiological and general scientific community in the sphere of Dementia. The presentation detailed the infrastructure supporting advancement in multi-modal data use and how to harness disparate data from eclectic and valuable sources across the world within a centralised management and access system, whilst allowing data providers to retain governance of their data.
Year(s) Of Engagement Activity 2017
 
Description Presentation at MRC Strategic meeting between health and bioinformatics centres - 29/1/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Centre for Improvement of Population Health through E-records Research (CIPHER). Presentation at MRC Strategic meeting between health and bioinformatics centres, Windsor
Year(s) Of Engagement Activity 2015
 
Description Presentation on DPUK as a use case of UKSeRP at the Administrative Data Research Network Conference, Royal Surgeon's Hall, Edinburgh, 1-2 June 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Chris Orton, Data Project Manager for DPUK at Swansea University, presented on DPUK as a use case of UK Secure eResearch Platform at the ADRN Conference in Edinburgh on Friday 2nd June 2017. The presentation outlined the complex instance of UKSeRP that DPUK uses to host its infrastructure, namely the DPUK Data Portal, and also showed how this links to other national research organisations who are also making use of UKSeRP.
Year(s) Of Engagement Activity 2017
 
Description Presentation on UK Secure eResearch Platform (DPUK) - 24/11/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation on UK Secure eResearch Platform (DPUK) at MRC meeting 'Managing the data life-cycle for stratified medicine', London
Year(s) Of Engagement Activity 2015
 
Description Presentation on research at Farr Institute CIPHER to Rebecca Endean - 26/1/16 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Presentation on research at Farr Institute CIPHER to Rebecca Endean, Director Research Base, Business and Science
Year(s) Of Engagement Activity 2016
 
Description Presentation to Clinithink, Swansea - 10/4/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact NLP of Emergency Department data: Early experience. Presentation to Clinithink, Swansea
Year(s) Of Engagement Activity 2015
 
Description Presentation to MRC Council - Centre for the Improvement of Population Health through E-records Research (CIPHER) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Presentation to MRC Council on the success of the Farr CIPHER centre and its impact through science and public engagement, including the development of data sharing research platforms that underpin a number of major research initiatives, including DPUK and MQ Adolescent Mental Health Platform
Year(s) Of Engagement Activity 2017
 
Description Presentation to Precision Medicine Catapult - 17/11/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation to Precision Medicine Catapult tem leaders from Cambridge University at visit to Swansea University

Precision Medicine Catapult team asked to come back to discuss opportunities and projects in more detail
Year(s) Of Engagement Activity 2015
 
Description Presentation to UK Biobank and Oxford Big Data Institute, Swansea 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation title - Use of UK Secure e-Research Platform (UKSeRP)

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Year(s) Of Engagement Activity 2014
 
Description Presentation to joint meeting of UKDP, EMIF (European Medical Information Framework) and eTRIKS (European Translational Information and Knowledge Management Services), London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Presentation title - UK Dementia Platform Informatics

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Year(s) Of Engagement Activity 2014
 
Description Presentation with Mick Dennis (Swansea) and Daniel Davies (UCL) to UK Biobank/DPUK neorodegerative outcomes group - 6/1/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Research Proposal: Dementia and Cognitive Impairment identification in routine health data: development and validation of algorithms within SAIL using CFAS cases.
Year(s) Of Engagement Activity 2015
 
Description Privacy protecting data linkage research: a key tool in hastening translation and achieving population impact. Invited Seminar - 10/6/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Privacy protecting data linkage research: a key tool in hastening translation and achieving population impact. Invited Seminar, Cambridge University
Year(s) Of Engagement Activity 2015
 
Description Protecting privacy through design - 14/3/16 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Protecting privacy through design. Invited presentation to Brocher Foundation, Oxford Internet Institute, Geneva
Year(s) Of Engagement Activity 2016
 
Description Research workshop on natural experiments at Health and Care Research Wales Annual Conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact We conducted a research workshop on the evaluation of natural experiments using linked data at Health and Care Research Wales Annual Conference. Many examples were provided from studies funded by the Farr Institute funding group, DECIPHer, MRC, ESRC, NIHR and Health and Care Research Wales. A discussion followed on the potential for further evaluations with researchers, practitioners from many organisations and members of the public, with several ideas being developed.
Year(s) Of Engagement Activity 2017
 
Description Secure Anonymised Information Linkage (SAIL) system. Educational presentation to the Confidentiality Advisory Group, Health Research Authority - 7/9/16 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Secure Anonymised Information Linkage (SAIL) system. Educational presentation to the Confidentiality Advisory Group, Health Research Authority, London
Year(s) Of Engagement Activity 2016
 
Description Supporting Prudent Healthcare through analysis of primary care data at the cluster level using SAIL, Prudent Healthcare International Conference - 9/7/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Supporting Prudent Healthcare through analysis of primary care data at the cluster level using SAIL, Prudent Healthcare International Conference, Cardiff
Year(s) Of Engagement Activity 2015
 
Description Transforming UK Biomedical and Health Informatics. Lecture to MSc in Health Data Analytics students, Swansea - 26/10/15 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Transforming UK Biomedical and Health Informatics. Lecture to MSc in Health Data Analytics students, Swansea
Year(s) Of Engagement Activity 2015
 
Description UK MED-BIO Partners meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Swansea were invited to attend the board meeting for the UK MED-BIO initiative hosted at Imperial College London, as both lead for the DPUK Data Portal development and as host of CIPHER. The meeting detailed how both Swansea research organisations as well as DPUK could work with UK MED-BIO, which has led to subsequent projects being commissioned and setup.
Year(s) Of Engagement Activity 2016
 
Description UKSeRP Demonstration at Informatics for Health 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Swansea University took a team of researchers, technical staff and project support staff to Informatics for Health to showcase the SAIL Databank and UK Secure eResearch Platform. As part of the showcase, both research and technical staff performed demonstrations of the live UKSeRP infrastructure to a varied audience, and this included using UKSeRP tenant organisations as exemplar instances of UKSeRP, examples including SAIL, DPUK, and ADRC Wales.
Year(s) Of Engagement Activity 2017