The Farr Institute

Who we are and how to Engage

Andrew Morris on behalf of the Farr team

11th February 2015

“To harness health data for patient and

public benefit by setting the international

standard in trustworthy reuse of electronic

patient records and related linkable data

for large-scale research.”

Our Vision

• A research collaboration that integrates and scales, at the UK level, the work of four Health Informatics Research Centres

• Aims to provide

– Physical and electronic infrastructure

– Support partnership by co-locating NHS organisations, industry, and

other UK academic centres

– Facilitate collaboration, the sharing of datasets, and the adoption

of common standards

– Develop new opportunities for future linkage and analysis of data at

scale

The Farr Institute

William Farr

“Diseases are more

easily prevented than

cured and the first

step to their

prevention is the

discovery of their

exciting causes”

UCL Partners

UCL, LSHTM, Queen Mary,

Public Health England

Scotland

Dundee, Glasgow,

Edinburgh, St Andrews,

Aberdeen, Strathclyde,

MRC HGU, NHS NSS

CIPHER

Swansea, Bristol, Cardiff,

Exeter, Leicester, Sussex,

NWIS, Public Health Wales

HeRC N8

Manchester, York,

Lancaster, Liverpool,

Sheffield, Newcastle,

Bradford, AHSNs

Health Informatics Research Centres

• Iain Buchan

• Harry Hemingway

• Ronan Lyons

• Andrew Morris

The Farr People (1)

• John Ainsworth

• David Ford

• Jill Pell

• Liam Smeeth

The Farr People(2)

Five Key Areas of £20M Capital

Spend to create a distributed Institute

• Physical centres

• Safe havens

• Digital e-infrastructure

• New data access

• Communications

Capital Spend

5M Capital Fund

Farr@Dundee Building Refurb

Farr@Scotland Edinburgh Bioquarter, 7 year lease

Enabling 3 New National Datasets – Imaging data; Lab data; GP data

Private Cloud HPC Infrastructure

Telepresence Suites

• Co-located with the Farr Institute in

– Scotland

– London

– Swansea

• Expertise in Admin data, public engagement, data linkage, law and computer science

• As well as having a research and enabling function the ADRN

(unlike Farr) is funded to be a service provider to social and

economic researchers.

Farr and the ADRN

Maternity

BIRTH DEATH

Neonatal Record

Child health surveillance Immunisation

GP consultations

Dental Out patients

A&E

Hospital Admissions

Mental Health

Prescribing Screening

Community care

Cancer registrations

Suicide

Imaging Laboratory

Substance misuse

National level data resources

Education Looked after children Community care

Care homes

BIRTH

Marriage

DEATH

HMRC DWP Census (Scotland & UK)

The Farr Buildings - CIPHER

• Farr @ Manchester

• Farr @ Liverpool

The Farr Buildings- HeRC

Historic buildings transformed into

health data science hubs

at the centres of two

biomedical campuses

The Farr Buildings- 222 Euston Road

The Farr Buildings-

Scotland

The Farr is but one of many key

Investments in Informatics Research

DH – Leading the nation’s health and care

Stratified Medicine Scotland Innovation Centre

The Farr Institute Network

• Trustworthy Use of Data

– Public participation and support

– Proportionate Governance

• Reduce complexity and duplication

– Standardisation

– Harmonisation

• Collaboration at Scale

– Making cross-centre working easy

– Federated Meta-analyses

– Managing the (healthy!) tension between collaboration and competition

• Buy-in

– Thousands of NHS entities

• Capacity Building

– CEBR estimate 58,000 data scientists by 2017; worth £216B to economy

• Industry Engagement that is real

– Business models and transparent rules of engagement and benefit sharing

Our Challenge is to deliver studies of 65

million people

Strengthen the UK’s capability in health

informatics research by building, co-ordinating,

and strengthening partnerships across the UK

and fostering a culture of data sharing

Vision

• Ed Conley

• Georgina Evans

• Catharine Goddard

• Cherry Martin

UK HIRN Team

Strategic Priority areas- delivered through Working

Groups

Goal:

• Enhance the contribution that the Network

makes to society

• Embed the values of public engagement within

the Network

• Promote opportunities for dialogue and mutual

learning

1. Public Engagement

Goal:

• Address shortage of multi-disciplinary skills for

health informatics and data science research

2. Capacity Building

• 34 cohorts

• 2.5m people have taken part and currently around 2.2m people – 3.5% of the population – are cohort members.

• We owe them a debt of gratitude

• 500,000 people are part of UK Biobank and soon the entire cohort will be genotyped.

• Participants from the UK cohort studies have given consent for their personal data to be linked to NHS records and other data sources such as education and the census

Adding Value to

UK Cohort Studies

Goal:

• Maximise benefits from UK investment in major

cohorts through development of standardised

and efficient approaches to linkage to routine

data sources

• Promote exploitation of the linked data by the

UK research community.

3. Cohort Study Linkage

Goal:

• Develop innovative methods for large-scale

analysis of health and non-health related

datasets

• College of Experts

4. Methodology Research

Goal:

• To raise awareness of information governance

challenges and concerns

• To help shape and disseminate best practice

• To provide expert input and support to policy

makers into the trustworthy re-use of linked

health data for large-scale research

5. Best Practice in Governance

Goal:

• Foster a sense of collaboration, transparency,

accountability, and commitment towards a

common vision among stakeholders

• Get things done!

6. Communications

Goal:

• Ensure a sustainable informatics research base for

the UK.

• Collaborate and learn from other disciplines

including economics, social sciences

• Key developments across the UK – MedBio Centres

TSB/UKTI/HSCIC/CPRD/GeL, Innovation Centres

• Improve the interface between higher education

institutions and industry

7. Partnership Building

The need to look outwards

• 170 organisations 32

countries

• An international

coalition, formed to

enable the sharing of

genomic and clinical

data.

• Aim is to combine

genomic and clinical

information across

diseases, organizations,

methods, and even

countries.

Digital Health Assembly: Open Innovation,

10-12 Feb 2015, Cardiff

A three-day international digital health conference to share

insight and experiences of Open Innovation in healthcare

focussing on the themes of:

Empowering Patients and Staff

Innovative Business Models

Big Data

The conference is designed for researchers, practitioners and policy

makers interested in record linkage and the use of routine health

data in their research. Themes include:

Cohort Study Linkage

Research Methodology

Best Practice in Governance

Public Engagement

Stratified Medicine

Clinical Trials Methodology and Execution

Open Innovation using Data Analytics

Data Linkage to Support Policy Development

Farr Institute’s First International Conference,

26-28 Aug2015, St Andrews, Scotland

Predictive Analytics

Scotland vs Wales on Sunday

Scotland 26 Wales 3

• Ed Conley

• Georgina Evans

• Catharine Goddard

• Cherry Martin

UK HIRN Team

Summary

• Welcome to the Farr Institute and

Network!

• Opportunities for outstanding research

• Inclusive and Collaborative

• Opportunities for international

collaboration

• Partnerships with Industry a priority

www.farrinstitute.org

Andrew.morris@ed.ac.uk

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