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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
Professor Andrew Morris
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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Professor Andrew Morris

  • 1. The Farr Institute Who we are and how to Engage Andrew Morris on behalf of the Farr team 11th February 2015
  • 2. “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
  • 3. • 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
  • 4. William Farr “Diseases are more easily prevented than cured and the first step to their prevention is the discovery of their exciting causes”
  • 5. 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
  • 6. • Iain Buchan • Harry Hemingway • Ronan Lyons • Andrew Morris The Farr People (1)
  • 7. • John Ainsworth • David Ford • Jill Pell • Liam Smeeth The Farr People(2)
  • 8. Five Key Areas of £20M Capital Spend to create a distributed Institute • Physical centres • Safe havens • Digital e-infrastructure • New data access • Communications
  • 9. 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
  • 10. • 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
  • 11. 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)
  • 12. The Farr Buildings - CIPHER
  • 13. • Farr @ Manchester • Farr @ Liverpool The Farr Buildings- HeRC Historic buildings transformed into health data science hubs at the centres of two biomedical campuses
  • 14. The Farr Buildings- 222 Euston Road
  • 16. 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
  • 18. • 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
  • 19. 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
  • 20. • Ed Conley • Georgina Evans • Catharine Goddard • Cherry Martin UK HIRN Team
  • 21. Strategic Priority areas- delivered through Working Groups
  • 22. 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
  • 23. Goal: • Address shortage of multi-disciplinary skills for health informatics and data science research 2. Capacity Building
  • 24. • 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
  • 25. 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
  • 26. Goal: • Develop innovative methods for large-scale analysis of health and non-health related datasets • College of Experts 4. Methodology Research
  • 27. 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
  • 29. Goal: • Foster a sense of collaboration, transparency, accountability, and commitment towards a common vision among stakeholders • Get things done! 6. Communications
  • 30. 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
  • 31. 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.
  • 32. 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
  • 33. 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
  • 34. Predictive Analytics Scotland vs Wales on Sunday Scotland 26 Wales 3
  • 35. • Ed Conley • Georgina Evans • Catharine Goddard • Cherry Martin UK HIRN Team
  • 36. 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