Summing up and moving ahead

David Ingram, University College London

Director, UCL Centre for Health Informatics and Multiprofessional Education, CHIME

UKRDS, Royal Society, February 26th 2009

The current scene – drawing on context of medicine and health care

Science is being transformed ‘bioinformatics is core discipline of biology’ – Royal Society 2005 14 years to sequence HIV genome; SARS took 31 days

Research and practice are increasingly information intensive ‘information is the heart of medicine’ – BMA 1994

Multiple legacy information systems are in use supporting and linking health care, research and industry

Government is creating pervasive new ICT infrastructure and core services

Other national and international initiatives are creating relevant infrastructures and standards

Escher: Order and Chaos

Data - are often messy and disorganised

Use and reuse of data need to be careful and context aware

number of procedures performed in relation to hospital admissionsFrom Shortliffe and Perault, 1989

Growth of Standard Nomenclature of Medicine (SNOMED)

Information explosion: in health care

Berkeley study estimated that after taking 300,000 years to generate 12 Exabytes, data is now accumulating at about 5 Exabytes per annum, reflecting shrinking costs of physical storage devices

Transferring at 100 Megabytes per second, 1Petabyte will take 116 days to stream

Data explosion

Tera 1012 10Tb US Library of Congress print collection

Peta 1015 5 years of EOS data

Exa 1018 5Eb all words ever spoken by human beings

Zetta 1021 ( radius Milky Way ~ 1Zm; Pacific ~ 1Zl )

Yotta 1024 ( earth ~ 1Yl )

From web site of Roy Williams, CalTech

philosophy

mathematics

information sciences

systems, measurement

physical science

life science

environment

medicine

education social structure

demography

politics

law

economics

industry, commerce

language, literature

artsreligion

The Circle of Knowledge: encyclopaedia, Ranganathan, 1950UNESCO, The Basic System of Order

rationalisation

abstractionmeaning,context

Librarians were worried about this trend 50 years ago – where to place the books on the shelves!

The Circle of Knowledge

Dimensions of challenge faced- aiming to enhance and sustain quality and utility of data

Diversity – of research requirements and supporting data management systems

Discipline and standards – of data description, modelling and management

Scale - of data capture, storage, processing and long-term curation

Evolution over time – of requirements and available, proven technologies

Willingness and capacity to engage – of research community

Education and capacity – at all levels Business case/ cost-benefit – metrics for measuring

and sustaining success Implementation – priority, resource, timescale

Dilemmas to be explored and resolved – stakeholder values and perspectives

Shareable v shared - motivation

Commonality v diversity - requirements

Confidential/restricted v public – access

Competition v cooperation – modus operandi

Global v local – implementation, capacity, organisation, resources

Standardised for general applicability v optimised for particular purposes – approach, what will work

Direction of travel – some guiding principles

The problem is urgent– data management and markets risk going the same way as money management and markets, for not dissimilar reasons

Research requirements should drive data standards and shared services

Research communities must value and own outcomes expected from shared services

Practical experience of implementation should guide and determine policy, strategy and investment in shared services

Rigorously controlled scope, scale and timing of innovation in shared services is essential

Information technology

‘ The one and only “horizontal technology”; a technology that pervades each and every part of social life and all the other technologies as well. ’W. Ch. Zimmerli, in Human Genetic Information:

Science, Law and Ethics, Ciba Foundation, 1990

IT has led us to aspire to, and enabled us to create, broad ranging data environments which we now struggle to tame

Achieving a constructive balance of top down and bottom-up initiative

Escher: Ascending and descending

In summary

A lot of work to be done Needs culture of collaboration, built on rigour,

engagement and trust Needs both top down and bottom up focus and

resource Requires an experimental approach, guided by

practical implementation experience – the pathfinder project

Solutions will not be handed down; they will evolve Realistic incentives and rewards are essential

Thankyou

Slow penetration of IT in health care

New systems are cumbersome to install and make use of. This is nothing new. The Times wrote in 1834 that it was unlikely that the medical profession would ever start to use the stethoscope

“because its beneficial use requires much time and gives rise to a fair amount of difficulties”From The Economist, Feb 28, 1998