NCRI Informatics Initiative Overview

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NCRI Informatics Initiative Overview

• Stuart Bell, Section Head, Community Alliances

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What is Informatics?

• Process of collecting, managing sharing
  information
• not just computers, but all of the people and
  processes involved
• Information can be used for treatment, planning,
  management and research, to improve healthcare
• Governments, industry research charities are
  devoting time and effort to develop informatics
  systems to allow data collected to be used to its
  full potential

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Informatics in cancer

• General using technology to make use of
  information relating to cancer cause, prevention
  and cure
• Example Looking for occurrences of a DNA base
  sequence within 3 billion base pairs in the human
  genome
• NCRI Informatics focus on using informatics to
  maximise the impact of cancer research
• Coordination and guiding role
• Primary concern is data sharing
• Main Issues Willingness, Preparation, Ability

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The scale of the information

• Data generated
• in the lab
• during trials of new drugs
• from studies about the health of an entire
  population
• Every year approx. 250,000 patients in Phase I,
  II and III trials. This includes
• industry and charity-sponsored studies
• treatment strategy studies
• not just new drug therapies
• Assume each patient gives at least 150 individual
  data elements then every year approx. 37,500,000
  individual data items

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The scale of the problem

• 10 million doctors worldwide, but only 30,000
  subscribers to The Lancet (although only 1 of
  many)
• Printed materials and published papers are only
  the tip of the iceberg
• Lots of data is negative, but that doesnt mean
  its not useful
• Vast quantities of data not available for 3rd
  parties
• BUT, computers are ubiquitous around the world,
  the potential audience is enormous, and e-health
  has huge potential

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Why dont people share data routinely?

• Intellectual property concerns we have a lot of
  money tied up in this
• Protectionism I did it, and Im keeping it
• Fear of the unknown I dont know how to do it
• Fear of scrutiny what if someone re-analyses my
  data and contradicts my conclusions?
• Gradual shift to acceptance of obligation to
  share
• A moral and ethical obligation the public
  provided the money and the output should be used
  as extensively as possible for the public good

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NCRI Informatics Initiative
Cultural Change through Community Alliances
Willingness to share
Ability to share
Research Scientist
Help to build a Cancer Informatics Platform
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The ONIX platform

• ONIX ONcology Information eXchange
• An Internet site through which researchers can
  find and access relevant cancer data
• Physically links together relevant resources
  through one portal
• Enables researchers to carry out simultaneous
  searches over multiple resources
• Data pulled together from multiple data sources
  can be downloaded and re-analysed
• Free to register
• Aims to be a one-stop-shop for cancer research
  info

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The ONIX platform
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The ONIX platform
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What ONIX V1.0 provides

• At launch in Jan 2009 ONIX will
• connect clinical trial data, patient data, basic
  research data etc. through one interface
• help avoid duplication of research effort
• help increase efficiency and make RD quicker
• freely available tool for users to register with
• enable novel research processes
• enhance in-house assets
• interoperate with the US National Cancer
  Institutes caBIG
• Begins to link huge resources (EBI, NHS, British
  Library etc)

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ONIX Phase I aims

• Comprehensive coverage of significant resources
• Allows data and resource discovery and simple
  searching
• Facilitation of research through improved access
  to information
• Be implemented as a training tool with UK medical
  schools
• Intrinsically enmeshed within major UK, EU and US
  programmes
• Foster consensus building amongst international
  cancer researchers and clinicians

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Some ways of using ONIX

• Researchers Clinicians
• Identify new sources and access data from them
• Find who is working on similar topics
• Find out which resources have got information
• One search goes across multiple data types
• Searches can be stored and repeated over time
• Funders Governance
• What scientific questions are being asked?
• What resources are being used?
• Whats the quality of resources?

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Some aims of ONIX Phase II

• Complex, biologically aware searching enabled
• Direct data retrieval from resources
• Promotion of data standards for major scientific
  domains relevant to cancer
• Expansion of number and breadth of resources
• Data sharing to become the default, with suitable
  safeguards, for data generated as part of cancer
  research, clinical and health programmes

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Phase III of ONIX

• Phase I complete, now working on Phase II
• Should there be a Phase III?
• If so, what should it look like?
• The ICU has been requested by the Management
  Board to put together a list of potential future
  scenarios/business cases
• Will be presented during the 25th February
  Management Board
• Decision required soon to ensure continuity of
  project

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Future vision an ONIX Phase III?

• The de facto tool of choice for cancer
  researchers and clinicians
• A platform with a very substantial user base,
  with hits measured in millions per day
• Links to resources beyond US and EU e.g. China,
  India and Australasia
• Extension of the platform outside of cancer to
  other major disease areas
• Creation of a global network of cancer researchers

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How can consumers get involved?

• Promote ONIX amongst their contacts
• Set up a sub-group to support and promote ONIX?
• Enquire when meeting researchers/funders if they
  are sharing their data?
• Encourage patients to consider giving consent for
  their data to be shared for research purposes
• Publicise the website and data-sharing culture

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The Future

• The future is here.
• It is just not evenly distributed.
• Prof. Sir Muir Gray,
• Chief Knowledge Officer for the NHS

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Thank You
More information at http//www.cancerinformatics.
org.uk/ Contacts julie.clifton_at_ncri.org.uk stuart
.bell_at_ncri.org.uk