Transcript 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.

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
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‘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
Data - are often messy and disorganised
Use and reuse of
data need to be
careful and context
aware
Escher: Order and
Chaos
Information explosion: in health care
number of procedures
performed in relation to
hospital admissions
From Shortliffe and Perault, 1989
Growth of Standard Nomenclature
of Medicine (SNOMED)
Data explosion
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
Tera
Peta
Exa
Zetta
Yotta
1012
1015
1018
1021
1024
10Tb
5Eb
US Library of Congress print collection
5 years of EOS data
all words ever spoken by human beings
( radius Milky Way ~ 1Zm; Pacific ~ 1Zl )
( earth ~ 1Yl )
From web site of Roy Williams, CalTech
Librarians were worried about this trend 50 years ago
– where to place the books on the shelves!
The Circle of Knowledge
philosophy
mathematics
religion
arts
information sciences
language, literature
systems, measurement
physical science
life science
environment
abstraction
meaning,
context
rationalisation
medicine
education
industry, commerce
economics
law
politics
demography
social structure
The Circle of Knowledge: encyclopaedia, Ranganathan, 1950
UNESCO, The Basic System of Order
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
 Competition v cooperation
 Global v local
– access
– modus operandi
– 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

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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,

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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