Enabling data linkage in CLOSER studies

About the research

This project focused on helping cohort and longitudinal studies overcome barriers to data linkage and highlighted ways of linking study data to routine health records, including detailed discussions with key stakeholders such as NHS Digital and the studies.

Guidance on data linkage was disseminated through knowledge exchange workshops (listed below). CLOSER resource reports were also produced for researchers, offering guidance and methodology on linking longitudinal data to health records.

Research lead

Andy Boyd (ALSPAC, University of Bristol)

Studies used

• Avon Longitudinal Study of Parents and Children
• Born in Bradford
• UK Biobank
• 1958 National Child Development Study
• Whitehall II

Research outputs

CLOSER resource reports

• NHS Digital: Precedents Set
• NHS Number and the systems used to manage them: An overview for researchers
• An outline framework for the efficient onward-sharing of linked Longitudinal Study and NHS Digital records

CLOSER workshops

• Challenges for data linkage (July 2013)
• Methods of disclosure control: Best practice within longitudinal studies (January 2018)

Papers

• Boyd A, Christen P, Dibben C, Elliot M, O’Keefe CM. Starting with the End in Mind: A Functional Framework for Record Linkage. To be published via the Isaac Newton Institute, Cambridge. Not yet available – sign up to CLOSER’s email newsletters to find out when it is published.
• McGrail K, Jones K, Akbari A, Bennett T, Boyd A, Carinci F, Cui X, Denaxas S, Douhall N, Ford D, Ghali W, Kirby R, Kum H-C, Moorin R, Moran R, O’Keefe C, Preen D, Quan H, Sanmartini C, Schull M, Smith M, Williams C, Williamson T, Wyper G, Kotelchuck M. A Position Statement on Population Data Science: The Science of Data about People. International Journal of Population Data Science. 2018:3(4). https://doi.org/10.23889/ijpds.v3i1.415
• Boyd A, Gatewood J, Thorson S, Dye T. Data Diplomacy. Science & Diplomacy. 2019;8(1). Available at: http://sciencediplomacy.org/files/boyd_may_2019_0.pdf

Read about other CLOSER data linkage projects.