David Lynn

1
Data MattersUK Research Data Service
conference26 February 2009

• David Lynn
• The Wellcome Trust

2
The Wellcome Trust

• independent biomedical research charity
• established in 1936
• current spend of over 600m pa
• supports over 3,000 researchers in more than 50
  countries, across six continents
• works to engage the public in research and to
  explore its societal implications

3
Mission and strategic aims
Our mission is to foster and promote research
with the aim of improving human and animal health

• We have six strategic aims
• advancing knowledge
• using knowledge
• engaging society
• developing people
• facilitating research
• developing our organisation

4
Facilitating research

• we strive to foster a research environment in
  which biomedical science can flourish
• we partner with others to develop key data
  resources
• Human Genome Project
• Structural Genomics Consortium
• UK Biobank
• we also fund key databases via
• Wellcome Trust Sanger Institute
• European Bioinformatics Institute
• additional grant funding
• we work to maximise access to research outputs
  (publications, data and collections)

5
Research is generating rapidly increasing volumes
of data
Structural Biology Structures deposited in the
Protein Data Bank
DNA sequencing total gigabases by week(80
gigabases per week is 130,000 bases per second)
Courtesy of Julian Parkhill
graph extracted from the Interim Report of the
Blue Ribbon Task Force on Sustainable Digital
Preservation and Access (Dec 2008)
6
in a diverse range of formats
7
Through sharing data we can increase its power

• Genome-wide association studies are revealing the
  genetic basis of common diseases through
  combining data across large patient cohorts

Courtesy of Leena Peltonen
and databases such as DECIPHER at the Wellcome
Trust Sanger Institute, enable researchers to
share data to gain new insights
DECIPHER Overview map of consortium members
8
Researchers are integrating large datasets to
gain new insights into complex systems
Malaria Atlas Project, University of Oxford
Heart modelling - CardioViz3D
Toussaint et al (2008) An Integrated Platform
for Dynamic Cardiac Simulation and Image
Processing Application to In Proc. Eurographics
Workshop on Visual Computing for Biomedicine
(VCBM)
Linking cholera outbreaks to sea temperature in
Bangladesh
9
And there is immense potential to link research
papers and data
10
A vast number of research users are accessing key
data resources

• For the year to August 07, the EBI website served
  an average of 340k unique hosts per month, with
  over 2m requests per day
• The Wellcome Trust Sanger Institute website
  regularly received 15m hits per week during
  2007/08 (a rise of 25 compared to previous year)

Wellcome Trust Sanger Institute Total number of
web pages requested)
Source European Bioinformatics Institute,
Annual Scientific Report 2007
11
Meeting the challenges 1 infrastructure

• rising volumes and complexity of data pose
  immense challenges for storage and curation
• e.g. WT Sanger Institute data storage capacity
  increased from 300 TB in 2005 to 1,500 TB in 2008
  
• key data resources need coordinated and long-term
  sustainable funding
• ELIXIR is aiming to build a sustainable
  infrastructure for biological information across
  Europe

12
Meeting the challenges 2 technical and cultural
issues

• coordination and advocacy from key communities
  (e.g. funders, institutions, publishers)
• provision of information and guidance for
  researchers
• appropriate incentives and recognition for
  researchers
• development of key technical standards, metadata,
  etc
• nurturing skills in data management career
  support and training

13
Meeting the challenges 3 data security

• research involving personal data must have
  appropriate safeguards to protect participants
• recent high-profile incidents have sharpened
  concerns around privacy, confidentiality and
  responsibilities of researchers
• the issues have been addressed in several recent
  reports
• Academy of Medical Sciences
• Council of Science and Technology
• Thomas/Walport data sharing review
• US Institute of Medicine
• management governance of data is a key concern

14
The Wellcome Trusts approach

• Long track record of promoting access to research
  outputs
• Bermuda principles (1996) Fort Lauderdale
  principles (2003)
• tailored data policies for major initiatives
• strong advocate of open access publishing
• data management and sharing policy published in
  Jan 2007
• researchers should maximise access to research
  data with as few restrictions as possible
• data management plans (DMPs) required for
  projects generating resources or large datasets
  that could be shared for added value
• will meet costs for data sharing activities
  outlined in DMPs
• increasing convergence of DMP approach amongst
  funders

15
The UKRDS in context ongoing Trust activity

• At UK level
• ongoing interactions with RCUK, JISC, HEFCE, RIN,
  UKDA and others
• several other multi-funder initiatives e.g.
  NCRI Informatics, UK Data Forum
• UK PubMed Central development
• active discussions around research uses of
  electronic patient records
• At European level
• ESFRI (ELIXIR)
• proposals for EU PMC resource
• At international level
• developing a code of conduct for public health
  and epidemiological data
• Fort Lauderdale follow-up meeting (led by Genome
  Canada) in May 09

16
UKRDS what is needed

• a coordinated approach to preserve key research
  data and ensure its long-term value is maximised
• a service which meets the needs of researchers
  and funders
• but the devil is in the detail must ensure that
  the project is developed in a way that truly adds
  value
• will still depend upon sustainable long-term
  funding for key data resources

17
UKRDS critical success factors

• must build upon and link effectively with
  existing UK activity, and develop effective
  international links
• will need full buy in from all major funders
  (Research and Funding Councils charities) and
  other key stakeholders
• will need to accommodate the differences between
  funders approaches, and between disciplines
• must be appropriately resourced to meet its goals

18
UKRDS pathfinder study

• clarification on the role that it is envisaged
  research funders will play
• a more detailed project specification will need
  to be developed with
• clearly stated expectations for partners
• full justification for the anticipated costs
• the study will need full buy-in from funders,
  institutions and the wider research community
• the resource implications of the study will need
  to be assessed carefully