Summing up and moving ahead

1
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

2
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

3
Data - are often messy and disorganised
Use and reuse of data need to be careful and
context aware
Escher Order and Chaos
4
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)
5
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 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
6
Librarians were worried about this trend 50 years
ago where to place the books on the
shelves!The Circle of Knowledge
religion
philosophy
arts
mathematics
information sciences
language, literature
abstraction
systems, measurement
industry, commerce
meaning, context
physical science
economics
life science
law
rationalisation
politics
environment
demography
medicine
education
social structure
The Circle of Knowledge encyclopaedia,
Ranganathan, 1950 UNESCO, The Basic System of
Order
7
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

8
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

9
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

10
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
11
Achieving a constructive balance of top down and
bottom-up initiative

• Escher Ascending and descending

12
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
13
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