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Promoting Data Standardisation Within
the Cancer Community
Max Wilkinson
NCRI Informatics Unit
Two Parts to Presentation
• PART1- Overview of the NCRI and
NCRI Informatics
• PART2- Overview on Education and
training issues in cancer
informatics
What Is the Role of the NCRI?
• Strategic oversight of cancer research in the UK
• Identify gaps and opportunities
• Plan and co-ordinate approaches between funding
bodies
• Monitor progress
• Focus of activity
• Co-ordination and strategic planning
• National Infrastructure issues
The NCRI Partnership
NCRI Cancer Informatics
High-level Steering Committee
Prof Alex Markham (Chair, Chief Executive, Cancer Research UK)
Prof Sally Davies (Director of Research, Department of Health)
Prof Mike Richards (National Cancer Director)
Prof John Williams (Director Health Informatics, Royal Coll Phys)
Prof Colin Blakemore (Chief Executive, MRC)
Prof Mark Walport (Director, Wellcome Trust)
Dr Philip Campbell (Editor-in-Chief, Nature)
Prof Tony Hey (Director, e-Science Core Programme)
Mrs Joanne Rule (Chief Executive, Cancer BACUP)
Professor Alan Horwich (Caldicott Guardian)
Dr Ken Buetow (NCI)
Industry Representative (TBA)
Management Structure
NCRI Board
HLSC
Chair of Informatics
Task Force
Data Sharing
Committee
Task Force
Informatics
Unit
NCRI Informatics & Strategic Partnerships
NCTR
NTRAC
NCRN
NCRI
secretariat
NCRI
Informatics
Unit
NCRI Strategic Framework for
Cancer Research Informatics
2 key points…
Common data standards should be
adopted
Data sharing should be the
norm
Data Issues
• Large amount of data
• Lack of data standards
• Lack of interoperability between databases
Need a cohesive approach between
disciplines
Work to Date
• Development of Framework and initial
implementation – introduce idea of data sharing
• Mapping projects, standards and resources on to a
matrix – what already exists?
• Development of a data sharing policy with funding
bodies
• Communicating with the community through website,
workshops and presentations – what does the
community want?
Areas of Focus
•
•
•
•
Conceptual Modelling
Imaging and Pathology
Clinical Trials and Functional Genomics
Human Genetic Variation
Timeline: Future Work of Unit
Infrastructure review
Training review
Data Sharing Implementation
Task Force
June 2004
Spring 2005
Informatics Website
• www.cancerinformatics.org.uk
• Strategic framework/ Draft data sharing policy
• Information resource for the funding bodies, scientific
and clinical communities and the Unit
• Main point of contact with relevant communities
• The matrix is a unique information resource
• Constantly being updated
Informatics Training Review
Implementation of data sharing across the NCRI planning
matrix will require investigators to create novel structured
ways of recording, linking and interrogating data
Max Wilkinson
Sept 2004
Report Submission June 2005
Review Objectives
• Compile a focused report on cancer informatics
training in the UK
• Training
• Education
• Determine the degree to which informatics training
can support the long term implementation of the NCRI
strategic framework
• Provide recommendations on cancer informatics
training to the HLSC & community
Commonality & Variation
•Genome
•Transcriptome
•Proteome
•Metabolome
?
Neoplastic
Normal
Reductionism versus Systems
DNA
mRNA
Protein
Pathway
Leroy Hood, James R. Heath, Michael E. Phelps, Biaoyang Lin
Science, Vol 306, Issue 5696, 640-643 , 22 October 2004
New Wave of Informatics
• Super dimensional structures are being
defined in genomes
• Exponential increases in complexity are
expected as transcriptomes and
metabolomes are characterised and
mapped
• Medicine is moving from a reactionary
model to a predictive and preventative
model
• The Human genome was only the
beginning
Several Levels In Cancer
Informatics
• Clinical Informatics
• Patient data & risk data
• Imaging & sample resources
• Clinical trials
• Bio Informatics
• Research & data manipulation
• Data & literature mining
• Information Technology
• Infrastructures
• Data storage & movement
• Tool development & support
Requires Culture Change (1)
• The idea of collaboration has to be altered
• A different structure of research group has
to be adopted
• Hypothesis driven research has to be
expanded to cover systems analysis
• Imperative to gather indicators of
implementation
Model of Integrative Medicine
(CLEF)
Clinical
IT
Research
Specific Skill Requirements
•
•
•
•
Integration & Translational Research
Network & Systems Design
Ethics, Legal, Security & Social Issues
Data structure
•
•
•
•
Metadata
Ontologies, Vocabularies & Object Models
Data Transformation
Systems Biology
• Functional Programming & Management
• Telemedicine & Collaborative tools
Requires Cultural Change (2)
•
•
•
•
•
•
•
Sharing
Federating
Describing (metadata)
Interrogating
Analysing
Collaborating
Reporting and enriching
Review Outline
1. Gather opinions of individuals involved in
informatics education
2. Outline current curricula in
•
•
Higher Education and Institutes
Professional/Scientific development
3. Identify strategies currently in place
4. Determine requirements for staffing demonstrator
projects
Summary
• The nature of cancer informatics is changing rapidly
• Coordinate strategies will foster more efficient
discovery
• Understanding the changing requirements of
education and training is fundamental to any strategy
• Primary aim is to provide recommendations
consistent with the long term implementation of the
NCRI Strategic Framework and data sharing policy
www.cancerinformatics.org.uk
Max Wilkinson
Tel: +44 (0)20 7061 8578
Fax: +44 (0)20 7061 8580
email: [email protected]