Centre for Health service and Academic Partnership in Translational eHealth Research (CHAPTER)

Lead Research Organisation: University College London
Department Name: Epidemiology and Public Health

Abstract

CHAPTER's host institution, UCL, is part of an established Academic Health Science Centre (AHSC), which brings together university and NHS organisations. This partnership lies at heart of the vision of CHAPTER. UCL Partners is the only AHSC with a system wide partnership model (n=14 NHS Trusts), and is responsible for the primary, secondary and tertiary care for a population of about 5 million people. UCLP hosts the largest concentration of Biomedical Research Centres (3 at UCL: UCLH, Great Ormond Street Children's Hospital and Moorfields Eye Hospital and two Biomedical Research Units (UCL: dementia; QMUL: cardiovascular). We will align our research with this significant (£165m) NIHR investment. Bringing together three of UCLP's academic partners (UCL, LSHTM and QMUL), and the HPA, CHAPTER will integrate for the first time multiple areas of critical mass (>60 data sources and >30 cross Faculty research groups with informatics expertise) in order to deliver our vision of driving the next generation of population wide research for patient benefit.

With support from the MRC led funding consortium, UCL will commit a further £4m to CHAPTER, providing sustainable posts (2 Chairs, 2 senior lecturers, 2 lecturers) and associated costs. Our NHS partners are investing significantly in new integration systems (across primary and secondary care), to drive improvements in the quality and safety of clinical care and this will enhance our ability to deliver impact across the whole translational cycle: from biological discovery including genomics and medical imaging, through innovative trials to improving clinical practice, service delivery, patient outcomes and public health.

Specifically CHAPTER will:
A answer important research questions, aligned with our BRCs: initially in cardiovascular medicine, maternal and child health, and infection. We will work with the Clinical Practice Research Datalink (CPRD) and expand linkages within and between national primary care soces, and the national EHR resources that we curate with >1m patients, including the national disease and procedure registries in cardiovascular disease, (UCL, NICOR), mother and child, and infection (HPA, LabBase).
B establish a new informatics platform (i.e. a common approach) ensuring that data collected in different clinical systems can be securely and meaningfully integrated for our research. We will improve the quality of clinically collected data, by linking to initiatives to improve the quality of clinical care. We will develop new approaches to tackle data which are missing in clinical records, analyse free text and medical images. Our visualization initiatives will support clinicians in decision making (e.g. dashboards), engage researchers in the complexity and meanings of data, and engage patients and public (citizen science).
C establish an Academy of Translational eHealth for inter-disciplinary training of clinicians, academics and those in enabling roles. Bringing together the training capacity of LSHTM (epidemiology and biostatistics) and UCL (health informatics, range of translational sciences) we will establish a new, cross-discipline, doctoral training programme, taught courses (undergraduate, masters and short course), career development and leadership development programmes.
D implement consent as part of clinical care across UCL Partner organisations and develop innovative public engagement programmes. We will engage patients in the design and evaluation of our UCLP-wide consent initiative and establish a continuous cycle of engagement with the public in the co-design of research using electronic health records. Research grants submitted from CHAPTER will be influenced from the start by such public engagement activities.
These four areas of work will lead to programme grant applications for further research for patient benefit as well as laying the foundation for extending CHAPTER research into other BRC priority clinical areas.

Technical Summary

UCL Partners is the largest AHSC in terms of population served (5m, ethnically diverse), and concentration of BRCs (n=5, £165m) and is the only AHSC with a system wide partnership model (n=14 NHS Trusts). Bringing together three of UCLP's academic partners UCL, LSHTM and QMUL, and the HPA, CHAPTER will integrate for the first time multiple areas of critical mass (>60 data sources and >30 cross Faculty research groups with informatics expertise) in order to deliver our vision of driving the next generation of population wide translational research. With UCL as host institution committing £4m to CHAPTER, and NHS partners investing significantly in new integration systems (across primary and secondary care), we will deliver impact across the whole translational cycle from biological discovery including omics and digital phenotyping with imaging through innovative trials to improving clinical practice, service delivery, patient outcomes and public health.

Specifically CHAPTER will:
A answer important research questions, aligned with our BRCs: initially in cardiovascular medicine, maternal and child health, and infection. These will link and exploit both UCLP primary and secondary care datasets and our national collections with >1m patients in cardiovascular (UCL, NICOR), mother and child and infection (HPA, LabBase).
B establish a new integrated informatics and biostatistics platform to underpin translational research.
C establish an Academy of Translational eHealth for inter-disciplinary training of clinicians, academics and those in enabling roles.
D implement consent as part of care across UCL Partner organisations and develop innovative public engagement programmes.

These four areas of work will provide launch pads for programme grant applications for further research for patient benefit as well as laying the foundation for extending CHAPTER research into neurodegeneration and other areas of BRC funding.

Planned Impact

CHAPTER research will have positive impacts for four major groups of non-academic beneficiaries (the Academic beneficiaries are described separately).

1. Patient and public health benefit: The overarching rationale for CHAPTER is to deliver benefit to individuals with, or at risk of, major clinical conditions and thereby to have a beneficial impact on the health of the public. We expect the earliest benefits to be apparent in the initial CHAPTER research programmes: cardiovascular disease, mother and child health, and infection, with later benefits in subsequent research programmes such as cancer and neurodevelopmental disorders.
Health of the public at international, national and local levels: CHAPTER electronic health record research will deliver new knowledge to inform public health policy building on our previous examples (e.g. safety of measles, mumps and rubella vaccination, Smeeth et al, Lancet). CHAPTER will develop new tools for surveillance, screening, and primary and secondary prevention of communicable and non-communicable disease and health related conditions. Enhanced effectiveness of public services and health policy in this way will ultimately benefit the general public. For example, with HPA we will develop real time (and partially automated) analyses of health record data for rapid response to communicable disease threats to public health. Building on our experience of record linkage between health and social domains (e.g. childhood health and educational attainment (Brocklehurst)), we can inform the rapidly expanding study of the social determinants of health and its policy implications.
Individual patient benefit: CHAPTER will deliver direct benefits to patients by
- Involving patients in their own clinical care, through personal health records (e.g in maternal and child health), and joint clinician-patient decision support tools.
- Expanding opportunities to participate in phase 2 and phase 3 randomised trials. By allowing trials to be carried out more rapidly and at lower cost, CHAPTER will help accelerate the pathway of novel, therapeutic interventions, through evaluative stages into clinical care.
- Improving the quality and safety of clinical care provided in primary and secondary care settings, through interrogation of electronic health records, linked to patient reported outcomes (PROMS) (e.g. in the national joint registry), and clinical events. This builds on existing quality improvement initiatives for example in the national registry of acute coronary syndromes, MINAP, which have demonstrated improved use of secondary prevention medication and lowering of 30 day mortality.
We are confident that our innovative model of public engagement and the PE activities embedded throughout CHAPTER will result in patients and the public having substantially more involvement in research designed to improve their health care.

2. The improvements in health care described above come about because of decisions taken by health policy makers, commissioners and provider organisations and clinicians - each of which are non-academic beneficiaries of CHAPTER research. At the heart of CHAPTER lies the partnership between NHS (acute and primary) organisations with the university, and UCLP is strongly placed to capitalise on this partnership.

3. Benefits to non-academics in enabling roles: The CHAPTER Academy will develop new career opportunities for those in data management, NHS IT and other roles which are essential to delivering CHAPTER aims, but which have fallen outwith conventional career pathways.

4. Industry benefits from CHAPTER outputs, will attract R&D investment to UK organisations, not only among partners in the drug, device, biomarker discovery industry (for example with more efficient trial programmes), but also, using the resources and methodologies developed in CHAPTER, in the IT vendor / informatics industry (see Pathways to Impact).

Publications

10 25 50

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Akintomide H (2015) Patients' experiences and providers' observations on pain during intrauterine device insertion. in The European journal of contraception & reproductive health care : the official journal of the European Society of Contraception

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Alahmar AE (2014) Resuscitated cardiac arrest and prognosis following myocardial infarction. in Heart (British Cardiac Society)

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Alazawi W (2014) Ethnicity and the diagnosis gap in liver disease: a population-based study. in The British journal of general practice : the journal of the Royal College of General Practitioners

 
Description British Heart Foundation Trustee
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact Trustee over seeing all aspects of BHF practice and policy
 
Description Canadian Consortium on Neurodegeneration in Aging (CCNA)
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Chief Scientist Genomics England
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.genomicsengland.co.uk
 
Description Chief Scientist Genomics England
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.genomicsengland.co.uk
 
Description Chief Scientist Genomics England
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.genomicsengland.co.uk
 
Description Chief Scientist Genomics England
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.genomicsengland.co.uk
 
Guideline Title European Society of Cardiology Guidelines on the management of atrial fibrillation
Description Citation in European Society of Cardiology Guidelines on the management of atrial fibrillation 2016
Geographic Reach Europe 
Policy Influence Type Citation in clinical guidelines
 
Description Cited in NICE Technology Appraisal
Geographic Reach National 
Policy Influence Type Citation in other policy documents
 
Description Co-author of one chapter in Professor Dame Sally Davies, Chief Medical Officer Annual Report 2016: Generation Genome. Chapter 13, "Solving Data Challenges"
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact The report discusses the current state of genomic service provision in the NHS in England. It explores the potential of genomics to improve health and prevent ill-health. The report presents evidence and discourse around: screening diagnosing rare diseases the use of genomics in personalised prevention It highlights gaps in: infrastructure public engagement organisation of research provision of services It makes recommendations to address these gaps and widen access to genomic services.
URL https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/631043/CMO_annual_report_g...
 
Description Continuing Medical Education module in high impact journal based on paper (Gender)
Geographic Reach North America 
Policy Influence Type Influenced training of practitioners or researchers
URL https://cme.ahajournals.org/a/20112P26zPhV
 
Description Dementia Programme Board - oversee the implementation of the PM's Challenge on Dementia to 2020
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Establishment of National Video Observation Service for Patients with tuberculosis
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact Results of trial presented to health service commissioners - London based service established and funded - also provides Video Observation to hard to reach groups outside of London. Service now treats most of the MDRTB patients in London
 
Description Innovative trials in the NHS
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact Presentation to cabinet level discussions on trial regulation
 
Description MHRA Expert Working Group on E-Cigarettes
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact Guide regulatory activity
 
Description Oral evidence to House of Commons Health and Technology Committee on 'Algorithms in decision making'
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
 
Description Paper (Blood Pressure) cited in 11 systematic reviews including on Cochrane review
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in systematic reviews
 
Description Paper (Blood Pressure) cited in epidemiological review published in high impact journal (Circulation Research)
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical reviews
Impact Not known
URL http://circres.ahajournals.org/content/116/6/925.short
 
Guideline Title 2015 Guidelines of the Taiwan Society of Cardiology and the Taiwan Hypertension Society for the Management of Hypertension
Description Paper (Blood Pressure) cited in national clinical guideline
Geographic Reach Asia 
Policy Influence Type Citation in clinical guidelines
 
Guideline Title Canadian stroke best practice recommendations: Secondary prevention of stroke, sixth edition practice guidelines, update 2017
Description Paper (Blood Pressure) cited in national clinical guideline
Geographic Reach North America 
Policy Influence Type Citation in clinical guidelines
 
Description Paper (Blood Pressure) cited in national epidemiological review
Geographic Reach North America 
Policy Influence Type Citation in clinical reviews
 
Description Paper (Data Resource Profile) cited in systematic review on electronic health care records research methodology
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in systematic reviews
 
Description Paper (Gender) cited in epidemiological review of peripheral arterial disease
Geographic Reach North America 
Policy Influence Type Citation in clinical reviews
 
Description Paper (Gender) reported in professional magazine for German doctors
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description SMC Media briefing
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact Widespread reporting and feedback of changes in attitudes
 
Description WHO guidance of Digital Interventions to support the stop TB strategy
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in a advisory committee
Impact Presented results of world's first trial of Video Observed treatment for TB - this is now recommended as modality of treatment support for TB internationally
 
Description WHO guidance on management of drug susceptible tuberculosis
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in a advisory committee
Impact VIdeo Observed Therapy recommended as a suitable alternative to Directly Observed therapy
 
Description WHO's Global Dementia Observatory discuss the implementation of the global action plan on public health response to dementia 2017-2025
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
 
Description Wellcome Trust - Biomedical Resources and Multi -User Equipment Committee
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description World Dementia Council
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Zoster
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact Directly informed Dept of Health vaccine policy
 
Description A risk-based approach to blood pressure for cardiovascular disease prevention.
Amount £299,621 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 04/2017 
End 03/2020
 
Description Administrative Data Research Centre England
Amount £2,420,000 (GBP)
Funding ID ES/L007517/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 10/2013 
End 09/2018
 
Description AstraZeneca PhD Studentship
Amount £72,124 (GBP)
Organisation AstraZeneca 
Sector Private
Country United Kingdom
Start 10/2013 
End 09/2016
 
Description BRC
Amount £111,000,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 04/2017 
End 03/2022
 
Description Centre for Health service and Academic Partnership in Translational eHealth Research (now Farr Institute London)
Amount £3,782,000 (GBP)
Organisation Farr Institute of Health Informatics Research 
Sector Academic/University
Country United Kingdom
Start 10/2013 
End 09/2018
 
Description Chronic Kidney Disease of unknow cause (CKDu) in disadvantaged communities in low-and-middle income countries (LMICs)
Amount £566,066 (GBP)
Funding ID MR/P02386X/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 04/2017 
End 03/2019
 
Description Clinical Researcher Starter Grant
Amount £99,463 (GBP)
Funding ID V0017 
Organisation Great Ormond Street Hospital (GOSH) 
Sector Hospitals
Country United Kingdom
Start 01/2017 
End 06/2018
 
Description Data science Respiratory Innovation Hub
Amount £1 (GBP)
Organisation GlaxoSmithKline (GSK) 
Sector Private
Country Global
Start 01/2017 
End 01/2022
 
Description Data-driven discovery for personalised medicine.
Amount £8,875,956 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 09/2014 
End 08/2019
 
Description Diabetic eye disease: a UK incidence and prevalence study.
Amount £56,144 (GBP)
Organisation Royal National Institute for Blind People 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2014 
End 10/2015
 
Description EPSRC MeDe Innovation (Competitive)
Amount £47,000 (GBP)
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Academic/University
Country United Kingdom
Start 06/2015 
End 06/2016
 
Description Genome-wide association scanning of cardiovascular functional traits in UK Biobank
Amount £203,720 (GBP)
Organisation The Medical College of Saint Bartholomew's Hospital Trust 
Sector Charity/Non Profit
Country Unknown
Start 04/2017 
End 03/2021
 
Description HDRUK Substantive Site
Amount £6,900,000 (GBP)
Organisation Hatton Academic Trust 
Start 05/2018 
End 04/2023
 
Description Health Protection Research Unit: Immunisation, jointly with Public Health England.
Amount £3,544,954 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 10/2014 
End 09/2019
 
Description Identification and characterization of chronic kidney disease in Uganda and Malawi
Amount £982,677 (GBP)
Organisation GlaxoSmithKline (GSK) 
Sector Private
Country Global
Start 09/2016 
End 08/2019
 
Description Impact of the media interest in side effects on the initiation and cessation of statins in the UK
Amount £55,000 (GBP)
Funding ID PG/15/80/31781 
Organisation British Heart Foundation (BHF) 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2016 
End 03/2017
 
Description Industrial Grant AstraZeneca
Amount £476,738 (GBP)
Organisation AstraZeneca 
Sector Private
Country United Kingdom
Start 12/2014 
End 08/2015
 
Description Innovative Medicines Initatives (IMI) Horizon 2020 Big Data for Better Outcomes
Amount € 18,000,000 (EUR)
Organisation European Union 
Sector Public
Country European Union (EU)
Start 03/2017 
End 02/2022
 
Description MRC Methodology Research Panel: Missing data in propensity score analyses of Electronic Health Records Data
Amount £400,000 (GBP)
Funding ID MR/M013278/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 09/2015 
End 09/2018
 
Description MRC Methodology Research Panel: Multiple imputation by chained equations for data that are missing not at random
Amount £164,000 (GBP)
Funding ID MR/M025012/1 
Organisation Medical Research Council (MRC) 
Department MRC/NIHR Methodology Research Programme
Sector Academic/University
Country United Kingdom
Start 02/2016 
End 01/2019
 
Description MRC and 10 other funders
Amount £4,700,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 05/2013 
End 04/2018
 
Description Marie Curie CoFund
Amount € 60,005,000 (EUR)
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 01/2013 
End 12/2017
 
Description Medical Bioinformatics Consortium (Farr)
Amount £750,000 (GBP)
Funding ID MR/K006584/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 01/2013 
End 01/2018
 
Description NHS Hospital Genomics
Amount £1 (GBP)
Organisation GlaxoSmithKline (GSK) 
Sector Private
Country Global
Start 01/2017 
End 01/2022
 
Description NIHR Biomedical Research Centre High Impact Initiative
Amount £343,856 (GBP)
Organisation National Institute for Health Research 
Department UCLH/UCL Biomedical Research Centre
Sector Public
Country United Kingdom
Start 10/2013 
End 03/2017
 
Description NIHR Senior Investigator
Amount £75,000 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 04/2017 
End 03/2022
 
Description Partner bereavement and skin disease
Amount € 89,922 (EUR)
Organisation European Academy of Dermatology and Venereology 
Sector Charity/Non Profit
Country Switzerland
Start 04/2017 
End 03/2018
 
Description Pathways to avoidable and unexplained deaths in the early lifecourse
Amount $110,808,640 (AUD)
Funding ID APP1127265 
Organisation National Health and Medical Research Council 
Sector Public
Country Australia
Start 01/2017 
End 12/2020
 
Description Preserving Antibiotics through Safe Stewardship: PASS
Amount £1,617,658 (GBP)
Funding ID ES/P008321/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 04/2017 
End 03/2020
 
Description Project Grant
Amount £130,206 (GBP)
Funding ID 087389/B/08/Z 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2015 
End 03/2017
 
Description Proof of Concept Biomimetic Scaffold (Lui)
Amount £98,867 (GBP)
Organisation Arthritis Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 06/2015 
End 06/2017
 
Description Real world effects of medicatons for chronic obstructive pulmonary disease
Amount £350,000 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 09/2016 
End 08/2019
 
Description Reporting of pharmacoepidemiological research using routinely-collected real world evidence: improving our RECORD
Amount $12,000 (USD)
Organisation International Society of Pharmacoepidemiology (ISPE) 
Sector Private
Country United States
Start 03/2017 
End 02/2018
 
Description Role of persisting neurotripic viruses in neurological diseases of ageing
Amount £7,679,000 (GBP)
Funding ID 201440/Z/16/Z 
Organisation Wellcome Trust 
Department Wellcome Trust Bloomsbury Centre
Sector Academic/University
Country United Kingdom
Start 10/2016 
End 10/2020
 
Description Scoping study for a family justice observatory
Amount £298,168 (GBP)
Organisation Nuffield Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 07/2016 
End 11/2017
 
Description Sir Henry Dale Fellowship
Amount £890,762 (GBP)
Funding ID 107731/Z/15Z 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2015 
End 09/2020
 
Description Sir Henry Wellcome Postdoctoral Fellow
Amount £250,000 (GBP)
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2015 
End 09/2019
 
Description Statin Wise: a web based series of 200 n of 1 trials of statins
Amount £997,988 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 11/2015 
End 10/2018
 
Description The genetic architecture of cardiovascular structural phenotypes in cardiac remodelling
Amount £200,119 (GBP)
Funding ID 203553/Z/16/Z 
Organisation Wellcome Trust 
Department Wellcome Trust Research Training Fellowship
Sector Charity/Non Profit
Country United Kingdom
Start 10/2017 
End 09/2020
 
Description UCL Big Data Institute Fund
Amount £4,000 (GBP)
Organisation University College London 
Sector Academic/University
Country United Kingdom
Start 01/2015 
End 12/2015
 
Description UK Cardiometabolic Traits Consortium
Amount £300,000 (GBP)
Organisation British Heart Foundation (BHF) 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2013 
End 01/2016
 
Description UK Infrastructure for Large-scale Clinical Genomics Research
Amount £24,000,000 (GBP)
Funding ID MR/M009203/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 07/2014 
End 07/2016
 
Description Understanding the health needs of mothers and children involved in family court cases
Amount £394,802 (GBP)
Funding ID KID/42838 
Organisation Nuffield Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 02/2017 
End 08/2020
 
Description Using Health record linkage in the UK Millennium Cohort Study to investigate childhood obesity
Amount £316,797 (GBP)
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2015 
End 03/2017
 
Description Using linked administrative datasets for testing, evaluation, monitoring of FNP in England
Amount £10,000 (GBP)
Organisation Nurse-Family Partnership 
Start 02/2016 
End 03/2016
 
Description Using linked electronic health data to improve eczema diagnosis and outcomes
Amount £1,305,851 (GBP)
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2017 
End 02/2022
 
Description Vascular disease among people with COPD: towards better prevention and treatment.
Amount £78,570 (GBP)
Organisation British Lung Foundation (BLF) 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2014 
End 08/2017
 
Description Wellcome Trust Senior Research Fellowships in Clinical Science (Making better use of computerised clinical data for epidemiological research)
Amount £1,206,724 (GBP)
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2012 
End 08/2017
 
Description e-Med Lab National Bioinformatics Award
Amount £2,200,000 (GBP)
Funding ID MR/L016311/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 03/2014 
End 02/2018
 
Title Probabilistic Data Linkage Tool 
Description A tool now routinely used by Public Health England to link databases 
Type Of Material Technology assay or reagent 
Year Produced 2015 
Provided To Others? Yes  
Impact Being used to evaluate success of migrant screening for tuberculosis and effectiveness of homeless health discharge projects 
 
Description Astrid Guttman 
Organisation University of Toronto
Department Institute for Clinical Evaluative Sciences
Country Canada 
Sector Academic/University 
PI Contribution Collaboration and work on Big Data Project
Collaborator Contribution Collaboration and work on Big Data Project
Impact -
Start Year 2013
 
Description Behavioural Insights Team 
Organisation Cabinet Office
Country United Kingdom 
Sector Public 
PI Contribution We supported the Behavioural Insights team to develop a trial of Video Observed THerapy for Tuberculosis in Moldova.
Collaborator Contribution The trial is nearing completion we will support analysis
Impact Video Observed Therapy established in routine practice in Moldova. Influenced WHO guidance
Start Year 2015
 
Description Brazil 
Organisation Federal University of Bahia
Country Brazil 
Sector Academic/University 
PI Contribution We have undertaken joint collaborative visits and organised joint workshops. We have developed a major funding application.
Collaborator Contribution As above: all are shared activities.
Impact A full application to the Wellcome Trust for a Biomedical Resources award.
Start Year 2015
 
Description CAFCASS 
Organisation Lancaster University
Department Department of Sociology
Country United Kingdom 
Sector Academic/University 
PI Contribution to provide the first systematic analysis of the inter-relationship between health needs, service provision and family court trajectories for mother and child by linking together administrative health and courts data for the first time.
Collaborator Contribution Data permissions & CAFCASS analyses; linkage to other sectors
Impact Project in phase 1 - no outputs as yet
Start Year 2017
 
Description Cognitive Footprint 
Organisation London School of Economics and Political Science (University of London)
Country United Kingdom 
Sector Academic/University 
PI Contribution Co-authored article published in The Lancet (July 2015)
Collaborator Contribution Co-authored article published in The Lancet (July 2015)
Impact Joint submissions for grant funding
Start Year 2015
 
Description Eastman Dental Hospital 
Organisation University College London
Department Eastman Dental Institute
Country United Kingdom 
Sector Academic/University 
PI Contribution Collaborations with academic groups outside this award
Collaborator Contribution Scientific collaboration around dental problems and vascular disease
Impact The setting for our proposed trial of targeting high vascular risk periods.
Start Year 2012
 
Description Family Justice Observatory 
Organisation Lancaster University
Country United Kingdom 
Sector Academic/University 
PI Contribution A scoping study that aims to explore the feasibility of, and inform the design of a new family justice observatory
Collaborator Contribution Enabling research at different levels of complexity through better use of administrative, survey and cohort datasets; national consultation with stakeholders; a review of selected 'observatories' and relevant literature and project management/coordination
Impact An outline specification for the new observatory (2-3 prototypes) and a final full project report: http://wp.lancs.ac.uk/observatory-scoping-study/publications/
Start Year 2016
 
Description Farr Institute 
Organisation Farr Institute of Health Informatics Research
Country United Kingdom 
Sector Academic/University 
PI Contribution Collaboration on PhD Studentship Project - expertise of the office of the National Director for Dementia Research, and resources of the NIHR funded initiative Join Dementia Research.
Collaborator Contribution Collaboration on PhD Studentship Project - expertise of the Farr Institute.
Impact Quantifying the impact of dementia on the activities of daily life by exploring novel metrics derived from lifestyle data may strengthen current outcome measures in interventional trials. The project outcomes have the potential to provide new insight into these complex and devastating diseases, and impact on the efficiency and effectiveness of interventional trials, and ultimately clinical medicine. Additionally, the project offers the opportunity to explore novel ways of engaging patients and carers in research in meaningful and satisfying ways, with obvious extension to future patient centred care models. Jointly supervising PHD Student.
Start Year 2015
 
Description Farr Institute 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution I am deputy director of the London Farr Institute
Collaborator Contribution Provides access to data, training and support
Impact Grant income and several publications
Start Year 2012
 
Description Farr Institute of Health Informatics Research 
Organisation Farr Institute of Health Informatics Research
Country United Kingdom 
Sector Academic/University 
PI Contribution Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research
Collaborator Contribution Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research
Impact None at present
Start Year 2013
 
Description Farr Institute of Health Informatics Research 
Organisation Farr Institute of Health Informatics Research
Country United Kingdom 
Sector Academic/University 
PI Contribution Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research
Collaborator Contribution Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research
Impact None at present
Start Year 2013
 
Description Farr Institute of Health Informatics Research 
Organisation Farr Institute of Health Informatics Research
Country United Kingdom 
Sector Academic/University 
PI Contribution Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research
Collaborator Contribution Grant writing Developing infrastructure Capacity Building Public and Patient Engagement Research
Impact None at present
Start Year 2013
 
Description Farr Institute of Health Informatics Research, London 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Country United Kingdom 
Sector Academic/University 
PI Contribution Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development
Collaborator Contribution Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development
Impact to follow
Start Year 2012
 
Description Farr Institute of Health Informatics Research, London 
Organisation Public Health England
Country United Kingdom 
Sector Public 
PI Contribution Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development
Collaborator Contribution Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development
Impact to follow
Start Year 2012
 
Description Farr Institute of Health Informatics Research, London 
Organisation Queen Mary University of London
Country United Kingdom 
Sector Academic/University 
PI Contribution Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development
Collaborator Contribution Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development
Impact to follow
Start Year 2012
 
Description Farr Institute of Health Informatics Research, London 
Organisation UCL Partners Ltd
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development
Collaborator Contribution Grant writing Research Writing of peer-reviewed papers Organisation of workshops, seminars, PhD programme and other training opportunities Infrastructure development
Impact to follow
Start Year 2012
 
Description Genomics England 
Organisation Department of Health Social Services and Public Safety (DHSSPS)
Country United Kingdom 
Sector Public 
PI Contribution I have been Chief Scientist for the 100000 whole genome sequencing programme since 2013. I led and created the consortium that won the grant that creates this data centre for the research component of the 100,000 genomes project. This goes live for the main programme imminently (see further funding)
Collaborator Contribution We are completing pilots in rare disease and cancer
Impact We have: - returned diagnoses to the NHS - created 13 NHS Genomic Medicine centres across England that serve to enrol, supply clinical data, validate feedback to patients - embarked on the main programme - formed a 12 company consortium to create academic NHS Industry partnerships - 9 HE Institutes now offer a Master's in Genomic Medicine
Start Year 2013
 
Description GlaxoSmithKline (GSK) 
Organisation GlaxoSmithKline (GSK)
Country Global 
Sector Private 
PI Contribution Ongoing collaboration in respiratory medicine focussing on COPD, therapies and vascular disease. Have obtained funding to exapnd our CPRD validation study and part-funding for a research fellow under the supervision of a clinical lecturer who works with me.
Collaborator Contribution Access to data, collaborative expert advice
Impact Has led to a PhD studentship plus published papers
Start Year 2010
 
Description Janice McGhee 
Organisation Administrative Data Research Centre for Scotland
Country United Kingdom 
Sector Academic/University 
PI Contribution Collaborative project on neonatal drug withdrawal syndrome and involvement of social care services in England and Scotland (part of ADRN research).
Collaborator Contribution Collaborative project on neonatal drug withdrawal syndrome and involvement of social care services in England and Scotland (part of ADRN research).
Impact Still active - none as yet
Start Year 2015
 
Description UK BIobank 
Organisation UK Biobank
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Cardiac outcomes working group
Collaborator Contribution Using research data to validate electronic health record data
Impact Papers in preparation
Start Year 2010
 
Description University of San Diego Video Observed Therapy for TB 
Organisation University of San Diego
Country United States 
Sector Academic/University 
PI Contribution We collaborated with University of San Diego to establish the VOT service in London
Collaborator Contribution Evaluation of a previously developed app for video observed support of treatment
Impact This has fed into WHO guidance of digital TB control strategies
Start Year 2015
 
Description WORLD DEMENTIA COUNCIL 
Organisation World Dementia Council
Country United Kingdom 
Sector Private 
PI Contribution contributed to working groups on data and prevention
Collaborator Contribution see above
Impact na
Start Year 2016
 
Title TXT4FLU 
Description This was a cluster RCT of text message reminders for flu vaccine in high risk groups. We have completed the trial that showed only a small, non-significant, benefit. 
Type Preventative Intervention - Behavioural risk modification
Current Stage Of Development Wide-scale adoption
Year Development Stage Completed 2015
Development Status Under active development/distribution
Clinical Trial? Yes
Impact The trial was based on use of electronic health records, and was completed, involving over 200,000 patients, for around £150,000. 
 
Title Join Dementia Research 
Description The 'Join Dementia Research' service provides a ready cohort of participants who have consented to take part in dementia research, and provides feasibility support to researchers for their studies. The service is funded by the Department of Health, in partnership with Alzeihmer's Research UK, Alzheimer's Society and Alzheimer Scotland. 
Type Of Technology Webtool/Application 
Year Produced 2014 
Impact 16009 volunteers have registered in the Join Dementia Research (JDR) service, of whom 4698 are enrolled in studies. The business-as-usual function has transferred to the Clinical Research Network coordinating centre. Development is supported by NHSE via SBRI funding. Growth of JDR is currently supervised by the office of the National Director for Dementia Research. 
URL https://www.joindementiaresearch.nihr.ac.uk/
 
Title Join Dementia Research - Phase 2 
Description Using Funding from SBRI Funds to extend the scope of the JDR webtool to link to NHS records and improve matching of volunteers to studies. 
Type Of Technology Webtool/Application 
Year Produced 2016 
Impact Improve matching of volunteers to studies and possible links to NHS records. 
URL https://www.joindementiaresearch.nihr.ac.uk/
 
Description "Great expectations: researchers and the public working together", Farr Institute International conference, St Andrews, Scotland 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The workshop was delivered by members of the four Farr UK patient and public engagement groups to researchers to outline ideas for joint public engagement working across Farr UK and for joint working with researchers.
Year(s) Of Engagement Activity 2015
 
Description Technology and Dementia at AAIC 2015 (July 2015) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Supporters
Results and Impact Presented on guiding principles on Big Data use in dementia research, and participated in a pre-conference panel on advancing technology for collaborative funding and programmes, leading to discussion and moderated Q&A.
Year(s) Of Engagement Activity 2015
URL https://www.alz.org/aaic/about/practical-information.asp
 
Description "Listening to the silence: What does unrecorded information in the electronic health record tell us?", Festival for Digital Health, London 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Researchers and lay members of the public attended a workshop to deepen understanding of the reasons for, and impact of, missing information in the electronic health record from both the patient and the researcher point of view.
Year(s) Of Engagement Activity 2016
 
Description "Ownership and access to personal (genetic) information in future healthcare", London Olympia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Public lecture to stimulate debate and promote use of public data in research.
Year(s) Of Engagement Activity 2015
 
Description "Using UK Cancer Data for Maximum Research Impact and Patient Benefit", Cancer Frontiers Meeting, London 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Patients and lay members of the public were brought together with experts within the cancer research and clinical communities in the UK to outline the potential of electronic health record datasets and how the Farr Institute can add value to the future research effort in this field.
Year(s) Of Engagement Activity 2015
 
Description "What Works in Inclusion Health: evidence synthesis and engagement on effective interventions", London 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact This public engagement workshop involved people with lived experience of social exclusion and marginalisation as co-researchers in the interpretation and writing up of a Lancet Series.
Year(s) Of Engagement Activity 2015
 
Description "What Works in Inclusion Health: evidence synthesis and engagement on effective interventions", London 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact This public engagement workshop involved people with lived experience of social exclusion and marginalisation as co-researchers in the interpretation and writing up of a Lancet Series.
Year(s) Of Engagement Activity 2015
 
Description 'Let's talk hearts' 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Our CV BRU and Farr team coordinates lay talks on aspects of heart disease around East London. In 2013/14 to date we have held 8 Let's talk hearts events in the community in 2013-14.

Community engagement
Year(s) Of Engagement Activity 2013,2014
 
Description 'Let's talk hearts' seminars 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Let's talk hearts' seminars: series of talks, open to all, providing a forum to learn about heart conditions, how (and why) you should keep your heart healthy, and the latest research on cardiovascular health.



Interaction of Barts CVBRU Patient and Public Advisory Group (PPAG) with Farr Institute's patient and public engagement activities
Year(s) Of Engagement Activity 2014
 
Description A career in medicine 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact Audience reported change in views, opinions or behaviours


Liam
Year(s) Of Engagement Activity 2015
 
Description BBC New online 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact The Challenge of saving lives with 'big data" BBC News 2016. This contributed to public debate on data sharing in health.
Year(s) Of Engagement Activity 2016
URL http://www.bbc.co.uk/news/health-35491177
 
Description BBC Radio 4 Today interview 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Gave interview
Year(s) Of Engagement Activity 2016
URL http://www.bbc.co.uk/programmes/b07z3c6s#play
 
Description BBC TV documentary 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Extended interview on statins for a new BBC One daytime TV show provisionally called "Health scares"
Year(s) Of Engagement Activity 2017
 
Description Better scientific reporting in e-health 
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 Presented and discussed the RECORD statement


Increase in requests for further information
Year(s) Of Engagement Activity 2015
 
Description Big Data from Health Records 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach International
Primary Audience Other audiences
Results and Impact Gave presentation

None to note
Year(s) Of Engagement Activity 2014
 
Description Big data and working as part of the Farr Institute @ London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Gave presentation

None to note
Year(s) Of Engagement Activity 2014
 
Description Body mass index and cancer 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Talk sparked questions and discussion afterwards

None of note.
Year(s) Of Engagement Activity 2014
 
Description Bring geneomics and electronic health records together 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Present our own work in diabetic retinopathy


Plans made for future related activity
Year(s) Of Engagement Activity 2015
 
Description British NeuroPsychiatric Association Annual meeting 24th February - medalist Lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Discussion of nosological challanges in Dementia
Year(s) Of Engagement Activity 2016,2017
URL http://bnpa.org.uk/wp-content/uploads/2017/02/BNPA-FINAL-PROGRAMME-2017.pdf
 
Description Building trust in the use of personal data for medical research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact This meeting was held in the House of Lords on 1 April 2014. Title of the talk was 'The value of personal data: a GP's perspective'.

The discussion points were:
. To what extent is publice concern based on the need for greater information about care.data and to what extent is the system itself at issue?
. How far will the plans set out by NHS England affect public views of the care.data programme and address public concerns? Is the six month pause sufficient time for this?
. Are there other suggestions for ways to improve public confidence whilst ensuring that the public benefits of the system are preserved?
. What part c
Year(s) Of Engagement Activity 2010,2014
 
Description Careers talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact I gave a careers talk and answered questions as a panel member at a secondary school in north London.

As above
Year(s) Of Engagement Activity 2013
 
Description Commission on Human Medicines 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Policymakers/parliamentarians
Results and Impact Nicotine containing products working group - 16 June 2014

Discussion on Electronic cigarette use in children and the potential for tobacco initiation. Sale and supply of licensed electronic cigarettes and other nicotine containing products.
Year(s) Of Engagement Activity 2014
 
Description Dementia and Neurodegeneration Network Ireland (DNNI) Inaugural conference (30 November 2017) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact explore current research/future directions in the Dementia/Neurodegeneration field, effective funding models for research and the importance of interdisciplinary collaboration.
Year(s) Of Engagement Activity 2017
URL https://www.eventbrite.ie/e/dnni-conference-2017-tickets-37728733658#
 
Description Developing methodology for public engagement and social media 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Developing novel methodology for mining social media and comments posted on national media websites in response to media reporting of our research on antimicrobial resistance. This is a novel approach to "listening" to the public's response to our research which we hope to expand across all clinical themes.

too early
Year(s) Of Engagement Activity 2014
 
Description E-health and randomised trials: the way forward 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation of our own work

International Conference on Pharmacoepidemiology & Therapeutic Risk Management Boston, USA
Year(s) Of Engagement Activity 2016
 
Description Electronic data: the case for greater access 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A keynote talk at the Nuffield Foundation.


I stood in at very short notice for Professor Sir Mark Walport who had to pull out at the last minute.
Year(s) Of Engagement Activity 2013
 
Description Engagement with young person and parent groups within GOSH about linkage of hospital data with administrative data 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Engagement with young person and parent groups within GOSH about linkage of hospital data with administrative data
Year(s) Of Engagement Activity 2017
 
Description European Brain Council Strategic Workshop (13 and 14 September 2017) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact EBC members and people working in the Value of Treatment White Paper. To explore new areas of project development for the EBC and the continuation of their Value of Treatment White Paper.
Year(s) Of Engagement Activity 2017
 
Description Farr Institute 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Gave presentation
Year(s) Of Engagement Activity 2016
 
Description Farr Institute Primary Care Sandpit 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Gave presentation
Year(s) Of Engagement Activity 2016
 
Description Farr London PPE Newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact contact from interested patients
Applications for funding PPE activity

Too early for impact
Year(s) Of Engagement Activity 2014
URL http://www.farrinstitute.org/cms/files/ppe_newsletter_-_issue_1_-_spring_2014.pdf
 
Description Farr London PPE advisory service 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Advice given to support funding applications to Wellcome Trust, NIHR, UCL schemes
Advice on setting up meetings for engagement, patient groups


Awarded grant from UCL for data visualisation project.
Year(s) Of Engagement Activity 2014
 
Description Farr London Patient Public Working Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact First meeting scheduled for December 2014

Too early to report
Year(s) Of Engagement Activity 2014
 
Description Farr London Soundboard Event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact ): The SoundBoard event was an opportunity for the public to learn about health informatics research and how big data is being used in research to improve our understanding of illness and disease and to improve patient care. The event also inspired discussion and debate about our research and planned projects that we wish to undertake. We want to understand the views of the public and patients so that this can inform our research and the way in which we undertake it.

Too early to report
Year(s) Of Engagement Activity 2014
URL http://www.farrinstitute.org/events/57/2014-11-10/women-and-child-health-evening-soundboard-event-at...
 
Description Farr's Frontier 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 The aim of the proposed meeting is to draw together researchers from Wales, Scotland and England to form a research team to develop a large grant application to get education, health and environmental data linked across England, Scotland and Wales in order to shed new light on the environmental determinants of cognitive function. Each Farr institute in the UK nations has ability to access administrative data and conduct the linkage with various thematic factors. Working together within a single research project provides an exciting opportunity for a large scale study and consequently great representative population of children. It would involve using both individual health and education data linked to environmental data across time at the relevant geospatial scale for a set of specific research questions, which is expected to transform cutting edge research in this area. Specific objectives of the initial meeting include: 1) across-nations networking on this topic; 2) development of the ideas for a joint cross-country large funding application to look at the environmental determinants of child cognitive function; and 3) development of further work examining the impact of environmental pollution on fetal head growth. This would build on research done by collaborators in Scotland using the Aberdeen birth cohort and would use hospital data available at UCL Partners.
Year(s) Of Engagement Activity 2017
 
Description First Farr Institute PE Network meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact The first meeting of the Farr Institute PE Leads from the 4 centres (Dundee, Manchester, Swansea and UCL) . A workshop was convened with the four Farr Institute PE leads and other colleagues to share information,ideas and proposals for PE activities across the Farr Institute.

Increased collaboration for joint PE activities across the Farr Institute.
Year(s) Of Engagement Activity 2013
 
Description First Farr PE Independent Advisory Group Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Health professionals
Results and Impact The first meeting of the Farr Institute @ UCL Partners independent PE Advisory Group (Chaired by Sir Nick Partridge with internationally recognised experts in PE such as Angela Coulter) provided useful brainstorming and guidance on the scope, focus, structure and potential activities of the PE work

A resounding enthusiasm for PE across the Farr Institute @ UCL Partners and commitment to continue to meet and contribute to the Farr PE work stream as its Independent Advisory Group
Year(s) Of Engagement Activity 2013
 
Description G7 meeting in Bethesda (February 2015) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 1) Presentation on Big Data in Azheimer's Research, feeding into work being carried out by other groups (such as the Ontario Brain Institute, the OECD, and Oxford Internet Institute).
2) Presentation on Patient Engagement, looking at data from UK scoping exercise on patients in dementia research, in comparison to other countries and other disease areas, to meet G8 Dementia Summit Commitment 2 "and we will increase the number of people in dementia related research studies". Discussion around UK services such as Join Dementia Research, and international initiatives such as the Global Alzheimer's Platform and the European Prevention of Alzheimer's Dementia Consortium.
Year(s) Of Engagement Activity 2015
 
Description GENERATE conference, London 
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 public met with key groups involved in developing the research agenda in Ear, Nose and Throat, Hearing and Balance care to formulate a strategy for cross-collaborative, high-value research.
Year(s) Of Engagement Activity 2015
 
Description Genomics England - 100k Genome Project (Multiple National & International Talks 2015-2018) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Multiple talks about the 100k Genomes project as GEL Chief Scientist
Year(s) Of Engagement Activity 2015,2016,2017,2018
URL http://www.genomicsengland.co.uk
 
Description Getting the best out of electronic health records 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A keynote international address at a major public health conference in Brazil

Liam answer here
Year(s) Of Engagement Activity 2015
 
Description Guardian newspaper roundtable 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I provided the NHS research perspective in 'Saving the NHS one byte at a time' roundtable, Guardian newspaper (2016) with NHS Digital, NHS-England and other stakeholders;
Year(s) Of Engagement Activity 2016
 
Description How big data can help health care 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact The piece will be embedded within open UCL learning materials
Year(s) Of Engagement Activity 2015
 
Description INSPIRE Development Workshop. Title - How will research impact service delivery? Non-communicable diseases 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Talk sparked questions and discussion afterwards

None noted
Year(s) Of Engagement Activity 2014
 
Description International Clinical Trials Day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Coordinated activities took place at each of Barts Health NHS Trust 6 hospitals. A range of information stalls, with staff on hand at each to engage with patients and respond to queries, and interactive activities.

Increased public and patient engagement, possible increase in clinical trials participants due to increase in awareness.
Year(s) Of Engagement Activity 2013
 
Description International collaborations 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Collaborators coming to Farr to participate in events, teaching

Too early
Year(s) Of Engagement Activity 2014
 
Description Invited talk: Imperial College 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited scientific seminar on "big data" to around 60 academics
Year(s) Of Engagement Activity 2017
 
Description John Snow talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 200 people attended an international conference to celebrrate 200 years of John Snow: I gave a keynote talk on the electronic future of epidemiology

None
Year(s) Of Engagement Activity 2013
 
Description Joint Programme for Neurodegenerative Disease (JPND) Scientific Advisory Board (SAB) strategic workshop on precision medicine (13 March 2017) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The purpose of the workshop is to bring together clinicians, basic scientists and industry scientists to examine how the precision/stratified medicine concept can be applied to neurodegenerative disease research.
Year(s) Of Engagement Activity 2017
 
Description Judging panel 
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 Member of the judging panel for the Academy of Medical Sciences spring meeting awards to clinician scientists in training.
Year(s) Of Engagement Activity 2017
 
Description Keynote address: Better e-health research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Summary of my group's work in e health



Liam
Year(s) Of Engagement Activity 2015
 
Description Launch of new website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Patient experience website which will transform the way patients learn about their visit and treatment in hospital.
Year(s) Of Engagement Activity 2015
URL https://www.rnoh.nhs.uk/home/news/16/02/rnoh-patient-guide-a-new-standard-patient-experience
 
Description Maximizing engagement opportunities 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact We have continued to extend our networks (e.g. in cancer (National Cancer Intelligence Network), kidney disease (Greater Manchester Kidney Information Network ) and asthma (AUKCAR)) to maximise engagement opportunities and impact and develop programmes for funding.
Year(s) Of Engagement Activity 2015,2016
 
Description Numerous media appearances 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Numerous interviews on various aspects of drug and vaccine safety

Public interest and policy impact
Year(s) Of Engagement Activity 2015
 
Description PPE sessions 
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 Ongoing sessions, run by the public engagement coordinator, are held throughout the year to advise researchers on how to include meaningful public involvement and engagement in their research and advise on funding opportunities.
Year(s) Of Engagement Activity 2015,2016
 
Description PhD summer school 
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 Lay members of the public introduced students to key concepts on presenting research results to a general audience and how to conduct effective patient and public involvement.
Year(s) Of Engagement Activity 2015
 
Description Plenary: how do we do better research. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A debate with the editor of the New England Journal of Medicine

Liam answer here
Year(s) Of Engagement Activity 2015
 
Description Plenary: the way forward 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Key-note end address presenting future strategy

Liam to answer here
Year(s) Of Engagement Activity 2015
 
Description Pragmatic randomised trials 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Part of a practical workshop on the way forward internationally

Plans made for future related activity
Year(s) Of Engagement Activity 2015
 
Description Presentation and discussant 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Policymakers/parliamentarians
Results and Impact Introduction to Epidemiology

Aim - to explore how epidemiological methods and techniques can be used to enhance our understanding of the spread and patterns of crime, and improve govenment crime reduction policies.
Year(s) Of Engagement Activity 2014
 
Description Presentation at HM Treasury 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact I presented on "Opportunities for research using e-health data" to a range of HM Treasury staff on behalf of Research Councils UK.

Fed into policy decisions.
Year(s) Of Engagement Activity 2013
 
Description Public Health Registrars 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Gave presentation
Year(s) Of Engagement Activity 2011,2016
 
Description Real World Evidence Symposium - Knebworth House 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Gave presentation
Year(s) Of Engagement Activity 2016
 
Description Real world data: what about confounding? 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Talk given with question time afterwards

None noted
Year(s) Of Engagement Activity 2014
 
Description Science Media Centre Background Briefing: The science of Statins 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Talk sparked questions and discussion afterwards

None noted
Year(s) Of Engagement Activity 2014
 
Description The 100 Ways case study project 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The 100 Ways case study project is being developed to showcase 100 examples of how research using linked electronic health records has had a positive impact on patient care and outcomes and service delivery, including highlighting the impact of public engagement in research.

Working with colleagues across Farr UK, we developed a project proposal to identify the impact of public involvement and engagement in research that involves the secondary use of health and social care data.
Year(s) Of Engagement Activity 2015,2016
 
Description The UK experience 
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 our experience with e-health data

Liam answer here
Year(s) Of Engagement Activity 2015
 
Description The self-controlled case seroes 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Talk sparked questions and discussion afterwards.

None to date
Year(s) Of Engagement Activity 2014
 
Description Training for Researchers 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Facilitation training helped researchers with their skills at working with patients and the public.
Communication skills training helped researchers with presentations to public and non specialised audiences.

Changed presentation skills so did not use powerpoint and created more engaging presentations.
Year(s) Of Engagement Activity 2014
 
Description Training for UCLH BRC 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Improved understanding of public engagement.

Asked to repeat course
Year(s) Of Engagement Activity 2014
 
Description Twitter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact twitter feed on activity

Reached international audiences
Year(s) Of Engagement Activity 2014
 
Description UCL Obesity Symposium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Discussion afterwards

None to note
Year(s) Of Engagement Activity 2014
 
Description UK Biobank Board Member 
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 UK Biobank is a national and international health resource with unparalleled research opportunities, open to all bona fide health researchers. UK Biobank aims to improve the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses - including cancer, heart diseases, stroke, diabetes, arthritis, osteoporosis, eye disorders, depression and forms of dementia. It is following the health and well-being of 500,000 volunteer participants and provides health information, which does not identify them, to approved researchers in the UK and overseas, from academia and industry. Scientists, please ensure you read the background materials before registering. To our participants, we say thank you for supporting this important resource to improve health. Without you, none of the research featured on this website would be possible.
Year(s) Of Engagement Activity 2017
URL http://www.ukbiobank.ac.uk/
 
Description Using population-level data to understand and improve the family justice system 
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 This event will bring together academics and data experts from the Ministry of Justice and CAFCASS to share learning and vision about using administrative data and existing cohort studies to understand and improve the family justice system. The event is part of a wider scoping study, funded by The Nuffield Foundation and led by Prof Karen Broadhurst, which will propose an organisational model ('an observatory') for improving the generation and use of research evidence within the family justice system.

The day will consist of opportunities to network, a series of short talks by academics using population-level, linked data, and an open discussion about the role of an observatory.
Year(s) Of Engagement Activity 2012,2015,2017
 
Description Using primary care systems for trials 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact An academic presentation on our experience of developing trial methodology

Liam answer here
Year(s) Of Engagement Activity 2015
 
Description What is making the world fat? (And what can we do?) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Public symposium: I chaired and was a member of the panel discussion

None to note
Year(s) Of Engagement Activity 2014