Max Wilkinson NCRI Informatics Unit Promoting Data Standardisation Within the Cancer Community

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

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) NCRI Cancer Informatics High-level Steering Committee

Management Structure NCRI Board HLSC Task Force Informatics Unit Chair of Informatics Task Force Data Sharing Committee

NCRI Informatics & Strategic Partnerships NCRN NTRAC NCRI secretariat NCRI Informatics Unit NCTR

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

Spring 2005 June 2004 Training review Infrastructure review Data Sharing Implementation Task Force Report Timeline: Future Work of Unit

Informatics Website 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 Max Wilkinson Sept 2004 Report Submission June 2005 Implementation of data sharing across the NCRI planning matrix will require investigators to create novel structured ways of recording, linking and interrogating data

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 ? Normal Neoplastic

Reductionism versus Systems mRNA Protein Pathway DNA Leroy Hood, James R. Heath, Michael E. Phelps, Biaoyang Lin Science, Vol 306, Issue 5696, , 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) ClinicalResearch IT

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

Max Wilkinson Tel: +44 (0) Fax: +44 (0)