Promoting Data Standardisation Within the Cancer Community

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

2. Two Parts to Presentation • PART1- Overview of the NCRI and NCRI Informatics • PART2- Overview on Education and training issues in cancer informatics

3. 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

4. The NCRI Partnership

6. 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)

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

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

9. NCRI Strategic Framework for Cancer Research Informatics 2 key points… Common data standards should be adopted Data sharing should be the norm

10. Data Issues • Large amount of data • Lack of data standards • Lack of interoperability between databases Need a cohesive approach between disciplines

11. 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?

15. Areas of Focus • Conceptual Modelling • Imaging and Pathology • Clinical Trials and Functional Genomics • Human Genetic Variation

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

17. 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

18. 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

19. 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

20. Commonality & Variation ? • Genome • Transcriptome • Proteome • Metabolome Normal Neoplastic

21. 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

22. 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

23. 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

24. 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

25. Model of Integrative Medicine (CLEF) Clinical Research IT

26. 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

27. Requires Cultural Change (2) • Sharing • Federating • Describing (metadata) • Interrogating • Analysing • Collaborating • Reporting and enriching

28. Review Outline • Gather opinions of individuals involved in informatics education • Outline current curricula in • Higher Education and Institutes • Professional/Scientific development • Identify strategies currently in place • Determine requirements for staffing demonstrator projects

29. 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

31. www.cancerinformatics.org.uk Max WilkinsonTel: +44 (0)20 7061 8578Fax: +44 (0)20 7061 8580email:max.wilkinson@ncri.org.uk