perspectives on personalized medicine & health research from policy makers, scientists and...
TRANSCRIPT
Perspectives on personalized medicine & health research from policy makers,
scientists and citizens
8th December 2017
Andrew MorrisDirector, Health Data Research UK
The Next 25 minutes • Gearing an entire country for
quality health care and research• Why now?• Data Science as the catalyst for
change • The challenge is the phenotype not
the genotype!• With big data goes big
responsibilities
The 4th Industrial Revolution
A National Challenge
Twelve Features of High Performing Health Systems Baker et al 2015
• Focus on QUALITY AND SYSTEM IMPROVEMENT as the Core Strategy • Developing LEADERSHIP SKILLS • Enhancing SYSTEM GOVERNANCE • ENABLING COMPREHENSIVE INFORMATION INFRASTRUCTURES AND WHOLE SYSTEM
INTELLIGENCE • Improving ACCOUNTABILITY AND PERFORMANCE MEASUREMENT • INVESTING IN INNOVATION AND RESEARCH CAPACITY – TO SUPPORT ECONOMIC GROWTH,
AND POPULATION IMPROVEMENT • Strengthening PRIMARY CARE • IMPROVING INTEGRATION and Care Transitions • Enhancing Professional Cultures and ENGAGING CLINICIANS • ENGAGING PATIENTS, Caregivers and the Public • Attending to ACCESS AND EQUITY ISSUES • Considering POPULATION HEALTH AND CHRONIC DISEASE MANAGEMENT in Care Management
Strategies
Models of “Baking” innovation into the System
• Information Continuity - Patients’ clinically relevant information is available to all providers at the point of care and to patients through electronic health record systems.
• Care Coordination and Transitions - Patient care is coordinated among multiple providers, and transitions actively managed.
• Continuously innovate, research and learn in order to improve the quality, value, and patients’ experiences of health care delivery.
• Easy Access to Appropriate Care - Patients will have easy access to appropriate care and information at all hours,
Human Centric Systems
scientific breakthroughs and converging technologies
that hold the potential to change the future.
Why Now? “4P” Medicine
• Predictive Customise diagnosis and treatment• Pre-emptive Better than curative – earlier diagnosis• Personalised Determine risk profiles, predict outcomes• Participatory Involve patients
Made Possible by
• Genomics • Phenotyping• Informatics• Analytics• New social contract
Why Now?
The OpportunityDigital revolution: 8 technologies that will change
health and care1. Smartphone 2. At-home or portable diagnostics3. Smart or implantable drug delivery mechanisms4. Digital therapeutics5. Genome sequencing6. Machine learning7. Blockchain8. The connected community
Kings Fund, January 2016
Why Now? Enormous scale required to establish clinical utility
Mahon & Tenenbaum, Journal of Precision Medicine 2015
Thought experiment: How many millions of people does it take to get 250 a year sick with a specific cancer and biomarker of various frequencies?
Incidence Rank
# 20# 3 # 10
Whole EU
UK
Best EU registries
Cancer as an example 2005 2010 2015 2020 2025
First singleCancergenome
~100 GenomesFor discovery
Pioneer RNAEpigenomes
1000s DiscoveryGenome
Trials routinely setUp with genomics
Some genomic Decision trials
Routine RNA, Epigenomes
Pioneer circulating Tumour DNA studies
~500,000 GenomesFor discovery
Genomics usedIn trial decisions
Genomic use in routineUse in selected clinicalsettings
>10 millionGenomesFor discovery,Mainly from secondaryUse of health care data
Genomics used In alltrial decisions
Routine use of regularGenomics in clinic
Data size +Complexity
~Tb ~Pb ~Eb
strong data engineering and data science
World ClassPatient care
Translation Trials and Innovation
Our Thesis Quality Health Care and Research: From Cell to
Community
Excellence In Life Sciences
Community Cell
Data Science
Data Science to support patient care
Layered accessLinks to CHI / NHS records
Prescription records
£12.5B
Population 5M
Single health care provider
14 Territorial Boards
38 Hospitals, 1020 General Practices
High rates of morbidity of common complex disease
Collaboration – Aberdeen, Edinburgh, Dundee, Glasgow, St AndrewsUnique patient identifier
Key TrendsPopulation: 5.3 million% aged 75+ : 7.9%GDP Per Head in 2011: $42,124
Inputs
• Acute Beds 16,500 (NHS)
• Doctors: 12,000 (NHS WTE)
• Nurses / Midwifes : 56,600 (NHS WTE)
The Scottish Health Service on a Slide
2015/165 year
Change
Estimated GP Patient Contacts 16,539,000 3.3%
Estimated Practice Nurse Patient Contacts 7,627,000 10.5%
New A&E Attendances 1,561,529 6.8%
Total Outpatient Attendances 4,699,868 4.7%
Total Inpatient/Day Case Discharges 1,582,305 6.8%
Day Case Discharges 448,782 10.6%
Routine Inpatient Discharges 441,024 9.5%Non-Routine (emergency) Inpatient
Discharges 540,890 6.4%
Urgent need to migrate from measurement of activity to REAL TIME MEASUREMENT of processes and outcomes meaningful for patients
Community Health Number
Date of Birth Sex Check
07 10 64 02 5 0
Linking Data
GP Hospital
Eye Van
Pharmacy
Lab Data CHI
InvestigationsScreening
AHPs
- the key to seamless “place-based”care
“Information Continuity”Emergency Care Summary
• Patient Safety is key driver• Available nationwide • Clinically Led, Patient Focused• Twice daily updates from GP
systems• Medications and Adverse
Reactions• Explicit Consent to view ECS • Full audit trail available at any time• Fully established 2006• Evaluation 2010• 3.5 Million Accesses per Annum• Changes management in 20%
A nationwide approach to digital radiology
• Common user interface across all hospitals• 850TB of data • 24,000 registered users in 38 hospitals• Web-based image viewing in over 2000
wards• 9,000 per day • 10% reduction in re-examination• 100% reduction in film and chemical cost • Significant reduced time to treatment• Image database of 21 million studies for
care and research
A National Diabetes System for Scotland
Total Scottish Population 5.2M
People with diabetes : 278,134 (5.1%)
People with Type 1 DM : ~27,000 (0.5%)
Single clinical information system SCI-Diabetes
SCI-DIABETES used in all 38 hospitals
Nightly secure sharing of data from all 1043 primary care practices across Scotland
Linked DNA/longitudinal phenotype
DARTSSCIDiabetes
Pe
rce
nta
ge o
f Pa
tien
ts
Data recoded within the previous 15 months Source: Scottish Diabetes Survey
Scottish Diabetes Survey 2002-2007
Recording of Key Biomedical Markers
Evidence of improved clinical outcomes
Amputation Visual Impairment Life Expectancy
Maternity
BIRTH DEATH
Neonatal Record
Child health surveillance Immunisation
GP consultations
Dental Out patients
A&E
Hospital Admissions
Mental Health
PrescribingScreening
Community care
Cancer registrations
Suicide
Imaging Laboratory
Substance misuse
National level data resources for 5M citizensfor care and research
Education Looked after children Community care
Care homes
BIRTHMarriage
DEATH
Taxation Pensions Census(Scotland & UK)
Health related datasets
Social/environmental related datasets
Geo-spatial
Applications •••
•
•
••
Case Studies of a Learning Health System“Collect once use often”
•••
•
•
••
Natural experiments
.05
.05
5.0
6.0
65.0
7.0
75
Pro
port
ion
deliv
ere
d p
re-t
erm
12 24 36 48 60 72 84 96 108 120 132 144 156 1680
Conception (expressed as months since August 1995)
26th March 2006
Smoke-free legislation and preterm deliveries“Back to sleep” campaign and SIDS
5560
6570
Ce
rebr
al in
farc
tion
eve
nts
per
100
,000
pop
n.
0 12 24 36 48 60 72 84 96 108 120 132
Time in months since Jan 2000
Smoke-free legislation and cerebral infarction Smoke free legislation and asthma admissions
Case Studies•••
•
•
••
Retinal Screening
Launched 2005Annual screening interval 86% of eligible population screened (n=252,897 in 2014)194 type 1 diabetes registered blind Scottish Diabetes Survey 2014
Can we stratify to increase screening interval?
Looker et al Diabetologia 56; 1716-25; 2013
• 11,275 cases of referable retinopathy• If people with T2DM and two examinations showing no visible
retinopathy were offered two-yearly screening • 44% fewer people need screened
Case Studies•••
•
•
••
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Perc
ent o
f pop
ulat
ion
Age Band
Number of distinct BNF paragraphs dispensed by five year age groupNHS Scotland Jan-Jun 2014
No itemsdispensed1
2
3
4
5
6
7
8
9
10
11
12
13
Nationwide Prescribing
545 million items since 2009
Investigating the safety of varenicline• Varenicline is by far the most effective smoking cessation
treatment available• Its use is however limited by an FDA warning of possible
cardiovascular and neuropsychiatric side-effects• Largestever cohort study (~150k) using state-of-the-art
methods linked to hospitalisation and mortality data, showed these concerns are unfounded
• Covered by Fox Business (amongst others), and Pfizer’s shares have risen on the back of this…. triggered FDA review…
Case Studies•••
•
•
••
• 300,000 people living with cancer
• Support patient care through an integrated cancer pathway
• Monitor clinical outcomes and effectiveness of treatment
• Maximise the use of data in existing clinical systems
• Adhere to relevant clinical data standards
The Scottish Cancer Intelligence Framework
The Innovative Healthcare Delivery Programme
Real time nationwide monitoring of stratified medicines
Case Studies•••
•
•
••
High resource individuals
2013/14 Spend on prescribing and hospitalisation
High Resource IndividualsGP Practice in Perth City South
Case Studies•••
•
•
••
165,460 patients registered
27,946 Volunteers
7,371 Volunteers Enrolled in Dementia Studies
Data Linkage Driving Efficiency in Clinical Trials
Evaluation of new Technologies using Data Linkage
Male, 55 years, Calcium Agatston Score 1,400
90-95% Specific and Sensitive for Coronary Heart Disease
Williams et al. Heart 2011;97:1198-1205Schroeder et al. Eur Heart J 2008;29:531–556
47% of Eligible Patients
Recruited Into the Trial
Only 11% of All PatientsExcluded From the Trial
Scottish COmputed Tomographyof the HEART (SCOT-HEART) Trial
Trial Population
Patients Referred for Evaluation of Suspected Angina due to
Coronary Heart Diseasen=9,849
Eligible Patients for SCOT-HEART trial
n=8,767
Ineligible Patientsn=1,082
Eligible Recruited Patients for SCOT-HEART trial
n=4,146
Eligible Non-recruited Patients n=4,621
Missing
137Patient preference
2613Clinician choice
547Not Approached
992Other
332
Randomization 1:1n=4,146
Scottish COmputed Tomographyof the HEART (SCOT-HEART) Trial
12 Centres - 4,146 patients (47% all eligible)
Perth Royal Infirmary, Perth
Ninewells, Dundee
Victoria Hospital, Kirkcaldy
Western General Hospital, Edinburgh Royal Infirmary, Edinburgh
Borders General Hospital, Melrose
St John’s Hospital, Livingston
Forth Valley Hospital, Larbert
Western Infirmary, Glasgow
Glasgow Royal Infirmary, Glasgow
Royal Alexandra Hospital, Paisley
University Hospital, Ayr
12 Centers Across Scotland
Complete Health Record Data Capture
One NationalHealthcare Provider
CTCA and Clinical Outcome1.7 Years of Follow-up
CHD Death and Non-Fatal MI
5
4
3
2
1
0
0 1 3
2073 1571 323
2073 1550316
CTCA
Standard Care
Follow Up (years)
Pro
po
rtio
n o
f p
ati
en
ts
wit
h a
n e
ven
t (%
)
853
837
2
5
4
3
2
1
0
0 1 3
CTCA
Standard Care
Follow Up (years)
Pro
po
rtio
n o
f p
ati
en
tsw
ith
an
eve
nt
(%)
2073 1569 321
2073 1547 315
851
835
2
HR 0.62 [0.38-1.01]P=0.053
HR 0.64 [0.41-1.01]P=0.056
CHD Death, Non-Fatal MIand Non-fatal Stroke
CTCA
Standard Care
CTCA
Standard Care
Changes Diagnosis 1 in 4Changes Management 1 in 4
Case Studies•••
•
•
••
UKPhenotyped
cohorts Precision Medicine
Translational Programmes
Epidemiology & Trials
The International Collaborative Model
International collaborations
Population Pharmacogenetics
• METFORMIN • In use for over 50 years
• We still don’t understand how it works
– 25% of patients get GI intolerance;
– 5% cannot continue it
• Can we use genetics to help us?
• Ability to link genetics with drug exposure and therapeutic response GWAS Metformin Response
Q-Q plot
The gene links cancer pathways, metformin pathways and type 2 diabetes
• 13,123 individuals • SLC2A2 encodes GLUT 2• C-allele homozygotes at
rs8192675 had a 0.33% (3.6 mmol/mol) greater absolute HbA1c reduction This was about half the effect seen with the addition of a DPP-4 inhibitor
• Equated to a dose difference of 550 mg of metformin
Sept 2016
Precision Medicine Ecosystem A Platform Approach to Multidisciplinary Collaboration
A platform for precision medicine collaboration linking Scotland’s domain expertise, data assets and delivery infrastructure to accelerate real world adoption of precision medicine
Public/private joint venture - £30M investment to date
Adoption by NHS Scotland
Collaborative programs in rheumatoid arthritis, ovarian/oesophageal /pancreatic
cancers, COPD and multiple sclerosis
Collaborative informatics hosting for MRC stratified medicine program and pan-
European IMI neurodegenerative program
Precision Medicine Ecosystem Launch
Exemplar 1 – Rheumatoid Arthritis –Scotland wide
• Involved: – Prof Iain McInnes (UoG; PI)– Dr Duncan Porter (GGHB)– Prof Paul McKeigue (UoE)– SMS-IC Lab– Sistemic– ThermoFisher– Aridhia
• Delivers:– Pharmacogenomic relationship for response/non response to
methotrexate in RhA• Utility:
– Allows clinicians to prescribe MTX only in cases where evidence base predicts it will work
– Creates more compelling arguments for use of biological therapy in early RhA
Exemplar 2 Alzheimer's Platform:
EPAD (IMI and EFPIA Funded)Europe Wide
Evergreen cohort feeding proof of concept trials for prevention of Alzheimer’s Disease
€64m project involving 36 EU partners.
Aridhia delivering analytical workspace for
adaptive clinical trials
Aridhia delivering analytical workspace for balancing recruitment/cohort effectiveness, co-developing the EPAD engine for adaptive clinical trials
An attempt to scale across the nation - The Farr Institute
£39 M investment 21 Universities
The Farr Institute vision
“To harness health data for patient and public benefit by setting the international standard for the safe and secure use of electronic patient recordsand other population-based datasets for research purposes”
Our Six Key Activities
1. Cutting Edge Research 2. Harmonised eInfrastructure, methods, data curation3. Public engagement. 4. Governance (safe havens)5. Capacity Building 6. Partnerships
To deliver impact nationally an internationally
Recent Publications
Building the Infrastructure
“A Research Hotel”
The Farr - 222 Euston Road, London
The Farr – Wales
Farr @ Manchester
Farr @ Liverpool
The Farr – Northern Powerhouse
Historic buildings transformed intohealth data science hubsat the centres of twobiomedical campuses
Safe People
(approved researchers)
Safe Places
(secure data
centres)
Safe Data
(limited de identified
data)
Public Engagement and Communication
Trusted Data Access ModelFor Innovation and Research
Worthwhile projectsPublic Benefit, scientifically and ethically sound
& approved
Safe Outputs
(SDC prior to release of results)D
ata
cont
rolle
rs o
pt in
to e
ach
proj
ect D
ata controllers opt in to each project
Compute , Analytical and Data InfrastructureEPCC – national service provider
• Physical sciences have dominated HPC provision for 20 years
• Limited use by biosciences and medicine
• Technology is bringing HPC and Data Analytics together
• New datasets –prescribing, imaging, laboratory, genomics
• 600 projects
• EPCC is the UK’s national HPC provider
• ARCHER and RDF - £96m UK Govinvestment
• 3,500 users• 118,080 cores• 28Pb of disk storage• Managed alongside Farr Institute
system at ACF• Data Security
“Mentorship and Career Development for the next generation of leaders in the field of Data Science”
• Education and Training– Postgraduate level courses: MSc and PhD– Continuing Professional development, includes: Applied
Mathematics, Geographical Information Systems, Statistics, Electronic Health Records, Precision Medicine & Public Health
• Doctoral Training Programme– Annual PhD Symposium and Summer School
• Researchers Exchange programme• Future Leaders in Health Data Science
Capacity Building
Colin McCowanAthanasios Anastasiou Georgina Moulton Paul Taylor Catharine Goddard
• Farr governance frameworks • Endorsed by Ireland’s Health Research Board • DASSL Model (Data, Access, Sharing, Storage
and Linkage) for safe access, governance, usage and linkage of data.
Innovative Governance
Kerina JonesGraeme Laurie
Nathan Lea James Cunningham
• Social media: #datasaveslivescampaign
• Citizen Juries
• Science Festivals- Cheltenham, Manchester, Edinburgh, Swansea, London
• Including the public as co-researchers
Public and Patient Involvement & Engagement
Sarah Cunningham-Burley
MhairiQuiroz-Aitken
Lamiece Hassan Mary Tully Stephen Melia Sarah Toomey Cherry MartinNatalie FitzpatrickLynsey Cross
• Development of new tools and methodologies• Statistical and analytical consultancy in large
and complex datasets• Cognitive computing/machine learning• Access to supercomputing infrastructure• Randomised Control Trials • Genomic Medicine
Partnerships with Industry
26th October 2016; part of Astrazeneca 2M genomes programme
International Partnerships
Challenges and Opportunities
Towards a UK wide ecosystem
Big Issues 1: Complex environment
CIPHER London HeRC Scotland
Medical Bioinformatics
Imperial
Oxford
UCL-Crick-EBI
Leeds
Warwick/Swansea
Uganda
Stratified/ Precision MedicineConsortia
Network
23 academic institutions
2 MRC Units
Interoperability: to work across systems with no additional effort
Big Issue 2. This is a tidal wave of data…
1987
A gigabyte : 1000 megabytes20 GB : Complete works of Beethoven
Computer Science: Where are we Now
A terabyte : 1000 gigabytesAs of 2014, Wikipedia stored about 7 TB of information.
A petabyte : 1000 terabytesBBC iPlayer transfers 8 PB of programs every month.
An exabyte : 1000 petabytesGlobal Internet data: ~80 EB per month
A zettabyte : 1000 exabytesWorld Wide Web: in 2015, holds 5 ZB of data…
1,000,000,000,000,000,000,000
10 petabytes per hour
30 petabytes per year
15 exabytes
5 petabytes
Health care is becoming increasingly data intensive
• Internet and cloud provide connectivity to every corner of the globe
• Smartphone: 2 billion users; 80% of adult population by 2020
• Socialome: the digital data harvested for health and wellness
• Quantified Self: Non-invasive biometric sensing, Tricorder wearables. Apple Research Kit
• Exposome: Pervasive environmental sensing will bring new knowledge to public policy decisions about creating a healthier physical environment, and
• $1000 genome (genome, microbiome, transcriptome, lipidome, proteome, metabolome, multiome/panarome) Stem Cell and Genetic Tx (2000 + trials)
• EHR data: exponential growth of phenome from Electronic Health Records
• Predictive Analytics (Machine learning, A1, and Visualisation). Prediction: TenX more new knowledge from research in silico over RCT by 2020
• Persuasive Technologies: Behavourial and motivational sciences
Big Issue 3 : Direct-to-patient
Big Issue 3Digital Maturity of Health Systems and Data
HIMMS 2013
NHS ENGLAND – STRATEGIC INVESTMENT
10 Recommendations • National Engagement
Strategy• Capacity building• Inter-operability• Centres of Digital
Excellence• £4bn Investment
Big Issue 4 It’s going to be Competitive!
Direct to Patient Recruitment and Apps
Big Issue 5: Data QualityData maturity and standardisationPharmacogenetics of Metformin
1: 1 tablet twice daily 3802: take one twice daily 3143: 2 tablet twice daily 3124: 1 tablet 3 times daily 2185: 1 bd 1706: take two twice daily 1707: take one daily 1568: 2 tablet 3 times daily 1559: 1 tablet twice daily 14910: take one twice a day 14311: take one 3 times/day 14312: 1 tablet daily 13013: 2 tablet twice a day 12914: 2 tablet bd 12715: 1 tablet twice a day 11716: 2 bd 11617: 1 tablet bd 11418: 1 tablet in the morning 10319: take one 2 times/day 9920: 1 tablet 3 times daily 95
ake one 2 twice a day for 16: take onetab 3 times daily 17: take one twice a day for 2 18: take one at 8 am and 1 at 19: three daily as directed 110: two daily in addition to c 111: 1 tablet eve meal 112: 1 tablet five times dai 113: take one twics a daily 114: take one twice a daily 115: 2 caplets twice a day 116: take one 2 times/day with m 117: 2 tablet 3 times daily cpus 4 118: 1 tablet daily for 1 week then 1 tablet bd 119: one 3 times daily 120: one 5 times daily 1
5720 variations for Metformin
alone!
Big Issue 6 Harnessing Inter-disciplinarity
Why Now?Technologies
Sensorss
Robotics
Natural language
Speech recognition
Machine learning
Data linkage
Data architectures
Social computation
Security
Full humanoid
Ubiquitousnetworked
Across media
Real-timenatural
Commodity tools
SemanticWeb
Cloud + havens
Socialintelligence
Personalisedsecurity
Single component
Bespoke
Narrow target
Batch processing
Domainspecific
Single database
Data warehouse
Individual intelligence
Corporate security
Confluence
Drivers for Health Data Science
Moore’s law: The potential computational capacity of microchips doubles every two years.
Cooper’s law: The transmission capacity for data doubles every 30 months.
Eroom's law: The cost of developing a new drug roughly doubles every nine years.
Metcalfe's law: The value of a network is proportional to the square of the number of its users.
Morris’s law:Affluence of computer scientists increases, on average, by one t-shirt size every 5 years.
Interdisciplinary Research Agenda
Ethics
Statisticalmethods
Networks
Security
Speech, textand image
Optimisation
Machinelearning
Probabilistic inference
Bio/physiological networks/dynamics
Federated datasafe havens
Ethic/governancein healthcare
Heterogeneous
linkage/correlation
Heterogeneous data linkage/correlation
Healthcare process optimisation
Large scale image and text analysis
Discovery systems
Learning health systems
Big Issue 7 (The biggest of all)
TrustPrivacyConfidentialityTrustworthy Use of Data
Farr@Scotland• Aberdeen• Dundee• St Andrews• Edinburgh• Strathclyde• Glasgow• Leicester
Farr@HeRC• Newcastle• Lancaster• York• Bradford• Manchester• Liverpool• Sheffield
Farr@London• UCL• LSHTM• QMUL
Farr@CIPHER• Swansea• Cardiff• Welsh Gov• Bristol
• Brighton
• Exeter• Surrey• Oxford
MRC Medical Bioinformatics
Leeds
Oxford
Uganda• Sanger• Cambridge• Oxford
Warwick-Swansea• Cardiff• PHE Wales• Birmingham
UCL (eMedLab)• EMBL-EBI• Sanger• KCL
• Crick• LSHTM• QMUL
Imperial• EMBL-EBI• Cambridge• Nottingham• Oxford• Farr@Swansea • HPA
• MRC CTU
• NHSS• PHS
Data Centre
Looking Ahead As of Summer 2017 Phase 1: >£100m
MRC & Partner Investment: Health & Biomedical Informatics Infrastructure
Weber G, Mandl K, Kohane I, JAMA 2014
The Hypothesis Can the UK weave the richest data tapestry
in the world….
Health Data Research UK: Vision
HDR-UK will be a new type of health and biomedicalresearch institute in the digital world.
HDR-UK will create a thriving, high-energy UK-widenetwork of inter-disciplinary research expertise thatwill disrupt traditional science and transcenddisciplines, by enabling new scientific discovery fromlarge multi-dimensional datasets and the applicationof new cutting-edge technologies to enhance decisionmaking and improve healthcare.
Desired Impact
••
••
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•
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HDR UK – Pathway to Impact Our Objectives
• Scientific Discovery: Integration of data science with biomedical and health science expertise to perform ground-breaking research;
• Train the Next Generation: An Institute training programme that embraces novel approaches to research training and mentorship to develop a cadre of health data science researchers, on a massive scale
• Unleash New Datasets for Research: Develop cutting-edge technologies and trusted research platforms that acquire, store, represent, and process large, multi-dimensional research data
• Create a UK-Wide Research and Innovation Ecosystem: an “information commons” for integrating basic biological knowledge with medical histories and health outcomes of individual patients
• National and International Partnerships: Work with established partners (e.g. ATI, EBI, GeL, UK Biobank) and nascent initiatives (GA4GH) to develop large scale exemplar programmes and support the foundations for a global international integrated Medical Bioinformatics Research Infrastructure
• Public Engagement and Trustworthy Use of Data: Work in partnership with the publics, funders, social scientists, legal/ethics experts, NHS, Government and industry to champion the trustworthy use of data
Strategic Operating Model• Head Office
– Separate legal entity, tiered structure – Wellcome Trust base – not a data controller
• Substantive Scientific Sites – Science, leadership, NHS partnership and delivery
• Single set of Terms and Conditions for collaborations– Core platforms, inter-operability, standards, governance, meta-data dictionaries – Partnership – coordinating and associate ROs
• Capacity Building • Partnership Programmes
– Funders/industry/Government– Thematic research initiatives at scale (eg cancer/ CHD/ Neurosciences )
HDR UK Core TeamInstitutionally agnostic HQLean core teamKey Positions …flexible employment model
– Deputy Director– Head of Training – Chief Data & Technology Officer– Ethics & Governance Lead– Thematic scientific leads – Legal Council/Board Secretary– Industrial Liaison– Communications/Marketing – Chief Operating Officer
HDR UK Scientific Structure
Strategic oversight and governance
Independent scientific review
INSTITUTEBOARD
Health Data Research UK
Ltd
Site Site Site Site Site Site Site
Director
Senior Scientific Leadership Committee
Partnership (funders)
Committee
Executive Team
Coordinating RO
Associate RO
Associate RO
Associate RO
E.g.
Progress Update
Company Establishment HDR UK Delivery
Our Board
Health Data Research UKScheme of Establishment
StaffingEmployment contractPay, grading & reward strategyPAYE/employer registrationEmployment model (inc VAT strategy)Employer’s Liability insurance
(travel and DiS being finalised)All Exec Team Job descriptionsRight to Work processEmployee handbookDirector, COO, EA and
interim FD in postDoCM now interviewing
IT/Dig MediaBranding Web hosting/site buildHDRUK email set-upBack Office system (Payroll,
Expenses, finance)HQ hardwareComms strategy underway
Governance/LegalsCompany incorporated Board inductionConflicts of InterestCharities Commission appnTrustee role descriptorsPartnership modelIPR, and Data policies
underway
PremisesHQ locationLease/LtOH&S policy
FinanceBank accountPension provisionCash flow/budget Audit process
Progress Update
Company Establishment HDR UK Delivery
• Scientific Discovery • Training • New Datasets for Research • UK ecosystem “Information Commons”• Partnerships • Ethics/Governance/Legal/Social
Substantive Call Site Launched1st August – 5th October
Workshops Glasgow, Leeds, London
Phase 1– Core Research Priorities
Actionable Health Data Analytics: • structured & unstructured (eg imaging, text) data for derivation of new or deep phenotypes. • adding value at scale to existing world-leading cohorts in the UK; • demonstrating system-wide opportunities for research that improves quality of care; Precision Medicine: • enable large scale, high-throughput research that combines genomic data with EHRs • genomics, epigenomics, statistical and complex genetics, population genetics, cancer
‘omics’, molecular epidemiology,21st Century Trial Design: • Transform Phase II – Phase IV clinical trials including ‘real world evidence’ studies. Modernising Public Health: towards prevention and early intervention• Ability to link health and administrative datasets across multiple environments • New technologies, from sensors to wearable devices to artificial intelligence,
HDR UK Expert Review Group Members
Chair: Professor Dan Roden, Vanderbilt University
Dr Rob Buckle, Funders Partnership Committee Chair
Dr Chris Chamberlain, UCB UK
Professor Jim Hendler, Rensselaer Polytechnic Institute
Dr David Hughes, NHS Digital
Dr Jan Korbel, EMBL-Heidelberg
Professor Alison Paprica, Institute of Clinical and Evaluative Sciences and University of Toronto
Professor Rashik Parmar, IBM
Professor Mihaela van der Schaar, Alan Turing Institute and University of Oxford
Dr John Speakman, New York University Medical Centre
Professor Andrew Morris, HDR UK Director
3
1
1
1 Swansea and Queen’s University Belfast
2 Midlands (Birmingham, Leicester, Nottingham, Warwick)3 Scotland (Glasgow, Edinburgh, Dundee, Aberdeen, Strathclyde, St Andrews)4 London (Imperial, KCL, LSHTM, QMUL, and UCL)
5 Bristol- Cardiff- Exeter- Bradford
6 Southampton-Surrey-Portsmouth
7 Oxford
8 Cambridge, EBI, Sanger
9 Northern England(Manchester, Lancaster, Leeds, Liverpool, Newcastle and Sheffield)
9
8
5
5
6
7
2
4
Emerging Partnerships
Aug Sept Oct Nov Dec Jan Feb Mar Apr May
Partnership Development
Director 1st
Day
RO workshops
Expert Review Group Shortlisting
5th Oct: Deadline for Substantive Site Applications
Time-Line – Phase 1
Expert Review Group – RO Interviews
HDR UK Partnership (Funder) Committee
HDR UK Substantive Sites Announced
HDR UK Board Established:
Site Agreement Negotiation
Exec RecruitmentHDR UK Exec Team:
Substantive Site Building:
Independent Peer-Review:
Substantive Site Set-up:
Research:
Board Orientation
1st Meeting 2nd Meeting
Research Starts!
• Scientific Discovery • Training • New Datasets for Research • UK ecosystem “Information Commons”• Partnerships • Ethics/Governance/Legal/Social
Flexible career pathways for interdisciplinary health data scientistsCreate a large Cohort across the UK
UKRI Innovation Fellowships and UKRI Rutherford Fund Fellowships at HDR UKCall (thanks to Jim Smith!):
• £12.5m for new early and mid-career post-doctoral health data science fellowships
• To build a critical mass of interdisciplinary skills at early phase of HDR UK’s establishment.
• -41 Fellows (30 early career fellows; 6 mid-career; 5 clinical fellows
“Defining a new career pathway”
• Discussions with Wellcome Trust (Anne-Marie Coriat)
Partnership with NVIDIA in AI
Head of Training Appointment
• Future Leaders Programme and Training Strategy
• Scientific Discovery • Training • New Datasets for Research • UK ecosystem “Information Commons”• Partnerships • Ethics/Governance/Legal/Social
CandidatesDigital Radiology, Text and Molecular Pathology• Eg Scottish Dataset of 21 million studies
for care and research • “Imaging lead”• Turing partnership UKB/CPRD/Innovate/Precision Medicine Catapult• GP Datasets • Enabling datasets for SME CommunityGenomics
• Scientific Discovery • Training • New Datasets for Research • UK ecosystem “Information Commons”• Partnerships • Ethics/Governance/Legal/Social
“Data Hubs in LSIS”
• NHS England, OLS, UKRI, John Bell, NHS Digital• Possible significant investment• 5 Regional Innovation hubs – 3/5 Million
population • “Industry friendly” • Complex!!!• Business Case under development
30th August 2017
National Data Services Platform
Regional NHS Interoperability Hubs
Research & Life Science Data Platforms
UK Health Research “Information Commons”
Data Security, Governance, Standards, Interoperable Infrastructure
Multi-Dimensional Big Data & analytics
innovation
Secure routine health and care data, eg HPC/Hadoop for ‘Omics/Molecular, Imaging, Text, Linked cohorts, Sensors, Environmental, Social (e.g. Housing, Education), User generated (social media etc.)
Inno
vatio
n
UK Health Data for Research
National datasets & standards
Routine Longitudinal Records
Local population dataLearning Health Systems
Real World Studies
Safer and more effective treatments
More effective integrated care pathways
Digital/Analytical innovation
Scientific Discovery
Prevention of disease
Earlier diagnosis of disease
Precision Medicine
Target Architecture
• Scientific Discovery • Training • New Datasets for Research • UK ecosystem “Information Commons”• Partnerships • Ethics/Governance/Legal/Social
• 20 Universities/Institutes• Public Health England• NHS England• NHS Digital • BHF• CRUK• Asthma UK • PM Catapult• GeL• OLS• Alan Turing Institute • NICE• Dementia Research Institute• CPRD
Connectedness
• New Core Partners– Northern Ireland Research and Development
• Prospective Core Partners – CRUK– Natural Environment Research Council
Emerging Partnership Opportunities
HDR UK Partnership Sites – Phase 2b
• Project-specific Engagement to address strategic challenges
• Lead researchers with niche expertise to capitalise on aligned capabilities/interests
Likely:• single organisation• Collaborates with one
or more Substantive Sites
Life Sciences Industrial Strategy Digital Health Catalyst
Pharma partnership – smart devices and building upon MRC Strat Med RASP
Cancer InformaticsMachine Learning and deep learning
Cardiovascular Data Science
Joint Strategy around training/AI/Imaging
• Scientific Discovery • Training • New Datasets for Research • UK ecosystem “Information Commons”• Partnerships • Ethics/Governance/Legal/Social
Cross-cutting activities of HDR-UK
• Ethics and Governance • Public and policy engagement • Technology strategy
– Information Commons – New dataset linkage/research enablement– Developed in collaboration, services to let you share data,
perform complex queries and analyse the results in different ways
– Privacy Enhancing Technology (Homomorphic Encryption)• Knowledge Exchange• Communications
International positioning
China Precision Medicine Initiative
Strategic Operating Model• Head Office
– Separate legal entity, tiered structure – Wellcome Trust base – not a data controller
• Substantive Scientific Sites – Science, leadership, NHS partnership and delivery
• Single set of Terms and Conditions for collaborations– Core platforms, inter-operability, standards, governance, meta-data dictionaries – Partnership – coordinating and associate ROs
• Capacity Building • Partnership Programmes
– Funders/industry/Government– Thematic research initiatives at scale (eg cancer/ CHD/ Neurosciences )
HDR UK Core TeamInstitutionally agnostic HQLean core teamKey Positions …flexible employment model
– Deputy Director– Head of Training – Chief Data & Technology Officer– Ethics & Governance Lead– Thematic scientific leads – Legal Council/Board Secretary– Industrial Liaison– Communications/Marketing – Chief Operating Officer
HDR UK Scientific Structure
Strategic oversight and governance
Independent scientific review
INSTITUTEBOARD
Health Data Research UK
Ltd
Site Site Site Site Site Site Site
Director
Senior Scientific Leadership Committee
Partnership (funders)
Committee
Executive Team
Coordinating RO
Associate RO
Associate RO
Associate RO
E.g.
Phase 1– Core Research Priorities
Actionable Health Data Analytics: • structured & unstructured (eg imaging, text) data for derivation of new or deep phenotypes. • adding value at scale to existing world-leading cohorts in the UK; • demonstrating system-wide opportunities for research that improves quality of care; Precision Medicine: • enable large scale, high-throughput research that combines genomic data with EHRs • genomics, epigenomics, statistical and complex genetics, population genetics, cancer
‘omics’, molecular epidemiology,21st Century Trial Design: • Transform Phase II – Phase IV clinical trials including ‘real world evidence’ studies. Modernising Public Health: towards prevention and early intervention• Ability to link health and administrative datasets across multiple environments • New technologies, from sensors to wearable devices to artificial intelligence,
Aug Sept Oct Nov Dec Jan Feb Mar Apr May
Partnership Development
Director 1st
Day
RO workshops
Expert Review Group Shortlisting
5th Oct: Deadline for Substantive Site Applications
Time-Line – Phase 1
Expert Review Group – RO Interviews
HDR UK Partnership (Funder) Committee
HDR UK Substantive Sites Announced
HDR UK Board Established:
Site Agreement Negotiation
Exec RecruitmentHDR UK Exec Team:
Substantive Site Building:
Independent Peer-Review:
Substantive Site Set-up:
Research:
Board Orientation
1st Meeting 2nd Meeting
Research Starts!
Our Values
Our quest is to harness large-scale data analysis and technology to power the UK as a leader in the field of precision health. HDR-UK will be underpinned by seven guiding principles:
A relentless focus on scientific excellence Building trust with the public through consultation and good governance on data sharing
and analysis through a commitment to engage and inspire the publics Flexibility, with the ability to quickly exploit emerging situations and technologies A commitment to team science An investment in young and emerging talent Novel ways of partnership working across academia, industry,the public, the NHS and the
public and third sectors, to demonstrate impactand follow through to societal benefit A determination to support a data intensive ecosystem for health research across the UK
and internationally.
An Opportunity for UK to Lead the Way in the 4th Industrial Revolution?
Thank you for listening!
Thank you for Listening