April 2010 MRC Data Sharing Policy Peter Dukes Policy 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 Bio Banks Patient groups Demographic data Investment in methodology, strategic skills & infrastructure Connecting data for new knowledge better health Other routine data sets (edcucation, environment… NHS Clinical Data

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 organisations 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 : 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