Data Sharing

NSHD Data Archive

The MRC National Survey of Health and development (NSHD) has a data archive with over 20,000 variables collected over the lifetime of the study.  The archive preserves data and meta-data (descriptions of the data) in electronic, paper, fiche, and, increasingly, image form, and includes biological samples.

A wiki

https://skylark.ucl.ac.uk

The wiki provides users with a detailed description of the study including all data collections across its 70+ years.  The wiki includes:

  • background information about the NSHD
  • all annotated questionnaires and other paper instruments
  • a description of the major topics, including information on repeated measures and standard variables
  • information about the variable search facility and guides on how to locate variables
  • NSHD information governance
  • a complete description of the NSHD data sharing process, including all the forms necessary to set up a data sharing agreement and submit a data access request

A variable search facility

https://skylark.ucl.ac.uk/Skylark

The variable search facility provides a platform to locate metadata covering more than 25,000 NSHD variables. Users will need to register, before they can log in to search for variables of interest, which can then be added to personal shopping baskets and saved. Following a successful data sharing application, these baskets will then be processed by NSHD staff and the data sent out.

Citing NSHD data using DOIs

The NSHD now has a set of persistent identifiers (DataCite DOIs, or just DOIs) that allow the tracking of research datasets as well as publications.  It is important that all authors cite these DOIs in publications based on NSHD data.

CLOSER Discovery

The NSHD is part of CLOSER Discovery.

Data Sharing

The LHA is committed to the core principles of the MRC with regard to data sharing. The LHA actively encourages the sharing of NSHD data with scientists for high quality research projects, to ensure that the scientific potential of the NSHD is maximised. Data sharing must be within the bounds of consent given previously by study members and meet rigorous MRC data security standards.

All proposals to use NSHD data must support and adhere to the core principles of data sharing with the MRC, namely:

  • Ethical: The privacy of individuals and the dignity of communities must be protected, while simultaneously respecting the imperative to improve public health through the most productive use of data.
  • Equitable: All proposals should recognise 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.
  • Efficient: Approaches should be proportionate and build on existing practice and reduce unnecessary duplication and competition.

The Skylark wiki holds electronic versions of all the NSHD questionnaires and topic level guides to the information collected. The wiki is allows users to explore the NSHD meta-data (descriptions of the data) to enable them to formulate proposals for using variables from the NSHD.

Data sharing is dependent on the project being approved by the NSHD Data Sharing Committee, a data sharing agreement being in place between the UCL and the academic institution that employs the researcher, and LHA resources being available to meet the requests for data sharing.