April 2010

MRC Data Sharing Policy

Peter DukesPolicy Lead – Data Sharing & Preservation

• MRC Policy & challenges

• Data diversity

• MRC Data Support Service project

• Coordination of strategy & policies

MRC policy & challenges

• Maximising lifetime value

• Easier discovery & access

• As few restrictions as possible

• Evaluating data sharing and preservation plans at peer review

• Justify new data collection

• State restrictions & period of exclusive use

• Enhancing data value

• Quality metadata

• Technical tools & standards

• Governance & agreements

• Culture

• Collaboration & recognition

• Transparency

Policy not evaluated or well monitored

Recognition, responsibilities & rights

Data Support Service: identifying study needs

PIs uncertain about requirements & importance

Data Support Service project: visibility of MRC studies

• MRC Policy & challenges

• Data diversity

• MRC Data Support Service project

• Coordination of strategy & policies

Sharing of research data collected with public funds

• 7 UK Research Councils

• Common datasharing policy

• Also Wellcome Trust

• Archives & repositories• ESRC: Archive and Data service

• NERC & STFC: Data Centres

• Informatics• Community databases & tools

• Repositories

• E-science Infrastructure• Software tools

• Grids

Leadership, partnership, investment

Data sharing: Maximising the lifetime value of data for new knowledge and better health

“Omics” Cohorts &Trials

BioBanks

Patient groups

Demographicdata

Investment in methodology, strategic skills

& infrastructure

Connecting data for new knowledge better health

Other routinedata sets (edcucation,

environment…

NHSClinicalData

Data diversity & Common interests

• Differences across the disciplines

• Scale, nature and sensitivity of data

• Means of data production

• Cultures and practices

• Common interests

• Research quality

• Data linkage, harmonisation, re-use

• Data quality – including metadata

• Simpler, easier curation tools

• Simpler, easier transactions

• Support with the regulations

• Recognition for sharing

• Funding

MRC Data Support Service

Data Preservation is sustaining the value of our data for new knowledge and better health

• Real issue of non-digital data

• Real issues with digital data

• Without metadata, the research data have little or no value

• Selectivity: Cost, value and ethics

Your organisation’s research data policies?

Diversity: a thousand practises bloom!

No central command

Rarely marches to a single step

• MRC Policy & challenges

• Data diversity

• MRC Data Support Service project

• Coordination of strategy & policies

The Data Support Service Project

• March 2009: DSS Project “soft launch” • Consortium

• Working with MRC community• 6 pioneer Units / Programmes

• 2006: MRC Council approval in principle for a Data Support Service to support PIs maximise the lifetime value of MRC-funded research data

• 2008-2009: Scoping & procurement

The Data Support Service project aims to reduce our uncertainty

• How many studies are worth preserving?

• Nature and scale of the challenges?

• Benefits?

• Cost?

• Options?

• Engagement?

MRC Data Support Service goals

• Enabling access to and research use of population health study datasets

• Maximizing the lifetime value responsibly

• Broadening the diversity of research

• through• better visibility of available resources

• promoting clear and simple access procedures

• promoting good practice in data curation

• promoting good practice in confidentiality management

• developing & validating methods, tools & standards• Collection cleaning curation analysis preservation…

In two years, we expect to the DSS Project to deliver…

• A web-based directory of 100+ population studies• With evidence of use & value

• Accessible guidance, targeted to real needs• With evidence of use & value

• Study-specific strategies for preservation & sharing• Data sharing plans for the pioneer studies

• With evidence of benefits & costs

• Evidence of cultural & practice changes• Unaware aware informed advocate

• Community engagement in standards development

• Experience that informs MRC strategy for the Support Service

Support Service Project objectives

• NOT a central repository of MRC-funded datasets

• Each MRC team / unit will remain responsible for

• Data quality

• Data security

• Decisions about collaboration & access

The catalogue

• The catalogue will contain knowledge (metadata) about the datasets and how they can be accessed

• description of the cohort and research team

• content (data fields and descriptors)

• patient populations included, periods covered

• methodology used for data collection

• methods used for data validation and cleansing

• availability of the dataset for access requests

• consent and disclosure policies governing access

• process for requesting collaboration or access

• No research data

Pioneer studies

• National Survey of Health and Development (MRC Unit for Lifelong Health and Ageing), UCL

• Avon Longitudinal Study of Parents & Children (ALSPAC), Bristol

• Whitehall Study, UCL

• MRC Social and Public Health Sciences Unit, Glasgow

• MRC Epidemiology Resource Centre, Southampton

• MRC Human Genetics Unit, Edinburgh

• [MRC Laboratories, The Gambia]

Beyond the Project

• Define and implement the Service• Informed by the DSS Project & other infrastructures

• Broaden the scope• From 6 to 36 studies?

• From cohorts to broader population health sciences?

• Develop external linkages• Interdisciplinary research: Cohort Research Facility

• Routine data: Research Capability Programme

• Infrastructure

• Alignment of the Cohort Research Facility and Data Support Service

• Relationship of these infrastructures with Repositories, archives, community databases

• Driving interdisciplinary collaboration & access

• Science-led research projects & funding

• Promoting Access

• Cross-funder good practice forum – Access Committee Chairs?

• Compare practices

• Cross-funder supra-access committee?

• Appeals & complex problems

• Improved data sharing plans

• Evaluation

• Do data sharing initiatives deliver the goods?

Policy & strategy issues