Data Management Development and Implementation: an example from the UK

SLA Conference, Boston, June 2015Geraldine Clement-StonehamKnowledge and Information ManagerMedical Research Council UK

• Encourage and support high-quality research with the aim of improving human health.

• Produce skilled researchers.

• Advance and disseminate knowledge and technology to improve the quality of life and economic competitiveness in the UK and worldwide.

• Promote dialogue with the public about medical research.

MRC mission

MRC Strategic Plan 2014-2019

Research Changes Lives 2014-2019Strategic intent: to support excellent discovery science and partnerships to promote translation to accelerate the pace of improvements in health and wealth.

• Strategic Aim One: Picking research that deliversSetting research priorities which are most likely to deliver improved health outcomes

• Strategic Aim Two: Research to peopleBringing the benefits of excellent research to all sections of society

• Strategic Aim Three: Going globalAccelerating progress in international health research

• Strategic Aim Four: Supporting scientistsSustaining a robust and flourishing environment for world-class research

My role at the MRC

• Policy advisor

• MRC Data Sharing Policy • Survey external changes and impact on the MRC• National and international policy harmonisation• Research information - outputs

• Technical advisor

• Best practice and standards across data lifecycle• Information management infrastructure• Research information systems and data quality• Records management

MRC Data Sharing Policy

http://www.mrc.ac.uk/research/research-policy-ethics/data-sharing/policy/

European Commission - pilot action on open access to research data

• Must have a Data Management Plan and maintain it

• Deposit in a research data repository and take measures to make it possible for third parties to access, mine, exploit, reproduce and disseminate — free of charge for any user

Opportunities for re-use

Photograph © CDC licenced under CC-BY Source: Flickr

Data linkages and new discoveries – maximising the value of data collected through MRC funded

research

Validation of results andresearch integrity

Source: WSJ, Nature and Science

Source: ODI, Gov.uk, World Bank, International Business Times

Economic and societal benefits

Data management lifecycle

• Thinking about data sharing from the incept of a research project• Data Management Plan

• Good data management during the project• Good information and records management practice• Standard adoption

• How to archive the data at the end of the project• Discoverability, sustainability, long term curation

• How to decide when data can be disposed of as it has reached the end of its valuable life

• Linking data

Example 1: Thinking upfront – developing data management plans

• Description of the data• Data collection / generation• Data management, documentation andCuration• Data security and confidentiality of potentially disclosive information• Data sharing and access• Responsibilities• Relevant institutional, departmental or study policies on data sharing and security

Community effort to standardise vocabulary used in data management plans

Example 2: Assessing long term value of datasets

Can we destroy this data set?

Who sponsoredthe research?

Who owns the IP?

Cannot decide, but can still

provide advice

No

What type of project is it? When did it end? What data is held?

What is the data gathering period?

Yes

Aspect to consider?

• What the current archiving arrangements (electronique, catalogued, etc)

• Is the re-usability likely?• What was the impact of the research?• Is it linked to a treatment still commonly in use?• Have any claims be issued in relation to this research?• What is the historical significance (e.g. 1st treatment

avilable for a particular disease, huge change in practice, novel way in which the research was conducted)

• What were the long term outcomes (for example if trial, are participants still alive)

• Are they any recent marketing authorisations?• Is there a data management plan?

Decision process: clear and documented

• Internal and external information gathered and recommendation is written and presented

• Involve relevant stakeholders• Primary Investigator• Domain expert (usually programme manager)

• Be clear who has the relevant authority to sign off the decision

• Have advice as to where deposit data if current location in unsuitable

• Be clear that 10, 20 and 25 years are only appraisal stages, not automatic destruction

Example 3: Linking data

Research Information Management

Illustration: Gavin Reddick, MRC

Useful information

• MRC Data Sharing policy• MRC Data MRC policy on sharing of research data from p

opulation and patient studies• MRC Data Management Plan• RCUK Principles on Data Sharing Policy• European Commission Guidelines on data management

in Horizon 2020 • Data Curation Centre (DCC)• UK Data Service• Knowledge Exchange• JISC Research Data Management• Casrai

Thank you!

geraldine.clement-stoneham@headoffice.mrc.ac.uk@geraldinecs

Illustration © Damian Navas licenced under CC-BY-NC-NDSource: Flickr