Role of Public Health Observatories in Public Health Genomics

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Role of Public Health Observatories in Public
Health Genomics
Louisa Ells, John Wilkinson, Julian Flowers,
David Pencheon, Hilary Burton
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Genomics

• the responsible and effective translation of
  genome-based knowledge and technologies for the
  benefit of population health
• (Bellagio workshop, April 2005)

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Bellagio
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What is an Observatory?

• Dictionary definition
• An institution or building term specifically
  designed or equipped for observing meteorological
  or astronomical phenomena
• Any building or structure providing an extensive
  view of its surroundings

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Observatories
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Saving Lives Our Healthier NationRole of
Observatories

• Monitoring health and disease trends and
  highlighting areas for action
• Identifying gaps in health information
• Advising on methods for health and inequality
  impact assessment
• Drawing together information from different
  sources to improve health
• Carrying out projects to highlight particular
  health issues
• Evaluating progress by local agencies in
  improving health and cutting inequality
• Looking ahead to give early warning of public
  health problems

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What is a Public Health Observatory?

• Combine qualities of academic departments and
  state based public health departments
• Work to short timescales and are responsive to
  new circumstances
• Small organisations with a degree of autonomy
• Observatories often hold very little data
  themselves
• Observatories are not normally involved in data
  collection
• (Hemmings J. and Wilkinson J.R. What is a Public
  Health Observatory? Journal of Epidemiology and
  Community Health 57324-326. 2003)

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How they operate

• Outputs
• Reports
• Websites
• Synthesised intelligence
• Training and development
• Advocacy
• Operational style
• Networks
• Involving other partners
• Commissioning research/activity
• Training environment

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Where do we start?

• Communicable Disease (susceptibility)
• Disease Surveillance (e.g. congenital
  abnormalities)
• Screening programmes
• Audit and Evaluation
• Monitoring health service activity in genetics
• Database for genotype phenotype correlation
• Personalised disease prevention programmes

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What do existing datasets and registers bring to
the field of genomics?

• Health Survey for England
• General Practice Research Database
• EPIC
• UK Biobank
• Other national and international prospective
  epidemiological studies
• European Prospective Investigation into Cancer
• Avon Longitudinal study of parents and children
• Gateshead Millennium Study

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New electronic patient records does this
present new opportunities

• Increasing the genomics knowledge base
• What might public health observatories start to
  do?

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Public Health Observatories could

• Advocate for better data capture on genetic
  conditions and their management
• Make available quality information for current
  public health programmes to the public health
  community
• Potential development of disease registers linked
  to the EPR
• Support the development of genotype/phenotype
  information and their links to the EPR
• Explore capacity of current databases to capture
  relevant family history
• Work with national surveys and others collecting
  survey information
• Provide and Information Service on routine data
  on genetic disease and service

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A PHO Action Plan

• Stage 1
• PHO genomics website
• Develop ways of presenting genetic information
  and research in a population context
• Create a new ph genomics section of the National
  Library for Public Health
• Develop a portal for genomics resources
• Establish an APHO working group

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A PHO action plan

• Stage 2
• Develop a strategic framework and QA protocol for
  collecting routine public health genomic data
• Commission a comprehensive review of routine data
  sources
• What data is currently collected
• Determine the public health genomic potential of
  existing datasets
• Develop more detailed recommendations to improve
  the collection of routine public health genomic
  data

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What next?

• What are your views?
• Is anybody doing any of this or thinking about
  it?
• What two or three data items should we be aiming
  to collect routinely from now on?
• How could a cross national collaboration add
  value?
• Is there a role for WHO and Eurostat?

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• Thank you for your attention
• www.nepho.org.uk
• John.wilkinson_at_nepho.org.uk