perspectives on personalized medicine & health research from policy makers, scientists and...

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


•

•

••

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…


•

•

••

• 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


•

•

••

High resource individuals

2013/14 Spend on prescribing and hospitalisation

High Resource IndividualsGP Practice in Perth City South


•

•

••

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


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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…

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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••

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!

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

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

“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

• 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

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?

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perspectives on personalized medicine & health research from policy makers, scientists and...

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