1. Maximising the availability and
use of research outputs – a
funder perspective
LSHTM meeting on opening research and data
22 October 2012
David Carr
Wellcome Trust
d.carr@wellcome.ac.uk

2. Sharing research outputs: our position
• committed as a funder to ensuring
research outputs (inc papers & data) are
made available in a way that maximises
benefits to health and society
• we are a leading advocate of open
access & data sharing:
− long-standing policies on open access
publishing & data management and sharing
− funding to implement policies and support for
key enabling infrastructures
− work in partnership at UK and international
level to provide enabling environment
− active engagement in key policy debates – e.g.
copyright legislation reform, open data agenda

3. Open access: our policy
“any research papers that have been accepted for publication
in a peer-reviewed journal, and are supported in whole or in
part by Wellcome Trust funding, to be made available through
PubMed Central (PMC) and UK PubMed Central (UKPMC) as
soon as possible and in any event within six months of the
journal publisher's official date of final publication”

4. Supporting open access
• providing dedicated funding to meet
costs associated with open access
publication
• developing UK PubMed Central
(soon to be Europe PMC) with 19
partner funders
• supporting researchers and
institutions, and working with
publishers
• contributing to advocacy, research
and awareness raising to accelerate
transition to fully open access world

5. Compliance with the Trust’s policy
Bottom line: compliance has increased since 2006
(currently ~60%), but still a long way to go

6. Strengthening our policy (June 2012)
• specific sanctions for non-compliance:
− withholding final payment on grants,
pending assurance papers listed on final
reports are compliant
− requiring previous Trust-funded papers to
be compliant before any funding renewals
or new grants awards are activated
− discounting non-compliant Trust-funded
papers as part of a researcher’s track
record
• from April 2013, where our funding is used
to meet an open access fee, the paper must be
licenced via a Creative Commons Attribution
(CC-BY) licence

7. eLife: open access innovation
• new open access journal dedicated
to enhancing communication of the
very best science
• collaboration between researchers
and three funders (Wellcome Trust,
Howard Hughes Medical Institute,
Max Planck Society)
• will drive innovation in:
− supporting fair, rapid and
constructive review
− maximising potential of on-line
publishing for communicating
cutting-edge science

8. Data sharing – a growing consensus
• major challenges associated with
increasingly vast & complex datasets,
but also tremendous opportunities
• increasing policy convergence
between major funders in promoting
sharing of research data
− expectation that data outputs be
preserved and shared in a way that
maximises value
− requirement for data management plans
as integral part of the application process
• but implementation and enforcement
of these policies is still rather variable

9. The Trust’s experience
• Data management and sharing policy
originally published in 2007, updated
in 2010
• require data management and sharing
plan, where proposed research likely
to generate data of value as a
resource for the wider community
• quality of DMPs variable, but evidence
that they are improving
• however, post-award tracking remains
a challenge and question as to
whether resource implications of plans
are being assessed appropriately

10. Major challenges
• there are significant barriers &
constraints to overcome:
− Infrastructural issues
− Cultural issues
− Technical issues
− Professional issues
− Ethical issues
• different disciplines at very different
stages; different types of data raise
distinct issues
• challenges will require funders to
work in partnership, with each other
& other key communities

11. Working in partnership: three current
initiatives
• ELIXIR – sustainable infrastructure for
European life science data
• Expert Advisory Group on Data
Access – advice on emerging issues
relating to data access across genetics,
epidemiology and social sciences
• Public Heath Research Data Forum –
cross funder initiative to increase access
to research data generated by public
health and epidemiology research

12. Increasing access to public health and
epidemiology research data
• current situation is often that:
− lack of access to data limits comparative
analysis or even checking for accuracy
− only immediate research interests are
addressed; broader questions are neglected
− lots of duplication in data collection
− data not archived effectively for long-term
• recognise there are legitimate
concerns, and that limits and controls
are essential…
• … but growing recognition among
funders that we need to find ways of
widening access to this data

13. Sharing research data to improve
public health
• Joint statement of purpose was
published in January 2011, with 17
initial funder signatories
• the statement set out:
– one vision – to increase availability of
research data generated by our funding to
accelerate improvements in public health
– three principles – share data in ways that
are equitable, ethical and efficient The Lancet, 377 (12 Feb 2011),
pp 537-539
– seven goals – immediate goals and longer
term aspirations

14. Three Principles
Equitable:
Any approach to the sharing of data should recognize and balance the
needs of researchers who generate and use data, other analysts who
may want to reuse those data, and communities and funders who expect
health benefits to arise from research.
Ethical:
All data sharing should protect the privacy of individuals and the dignity
of communities, while simultaneously respecting the imperative to
improve public health through the most productive use of data.
Efficient:
Any approach to data sharing should improve the quality and value of
research and increase its contribution to improving public health.
Approaches should be proportionate and build on existing practice and
reduce unnecessary duplication and competition.

15. Seven goals
Immediate goals
1.Data management standards support data sharing
2.Data sharing is recognized as a professional achievement
3.Secondary data users respect the rights of producers and
add value to the data they use
Longer-term goals
4.Well documented data sets are available for secondary
analysis
5.Capacity to manage and analyse data is strengthened
6.Published work and data are linked and archived
7.Data sharing is sustainably resourced for the long term

16. A broad range of funder partners
Signatories…
Supporting organisations…
16

17. Implementing the joint statement
• partner funders have formed a
Public Health Research Data
Forum, with a joint workplan
• activities in three main areas:
− capacity and skills
− culture and incentives
− infrastructure and tools
• challenges will require key inputs
from researchers, institutions,
funders, repositories and publishers

18. Forum activities
• developing options for capacity building
and training in LMICs
• commissioning work on data citation
mechanisms
• building the evidence base on the
perspectives of research participants and
stakeholders in LMICs
• developing accessible guidance on
metadata and standards
• scoping a potential workshop with African
academies on data sharing

19. Literature and data – closing thoughts
• tremendous opportunities, but
recognise costs and barriers which
will require research funders and
institutions to work together
• importance of institutional planning
and coordination:
− assess resource needs for data assets
− articulate clear policies and processes to
support researchers
− robust evaluation and monitoring
• particular challenges of working with
LMICs - equity and sustainability

20. Further information
http://www.wellcome.ac.uk/openaccess
http://www.wellcome.ac.uk/publichealthdata
d.carr@wellcome.ac.uk