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UK Longitudinal Linkage Collaboration (UK LLC): The National Trusted Research Environment for Longitudinal Research [PDF]

International Journal of Population Data Science
Introduction The UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment (TRE) for the UK's longitudinal research community, supporting the UK's unparalleled collection of Longitudinal Population Studies (LPS ...
Andy Boyd, Katharine Evans, Emma Turner, Robin Flaig, Jacqui Oakley, Kirsteen Campbell, Richard Thomas, Stela McLachlan, Matthew Crane, et al.   +9 more
doaj   +19 more sources

Including seldom-heard voices in a novel, circular and reflective data learning model: the Citizen Panel at UK Longitudinal Linkage Collaboration (UK LLC) [PDF]

International Journal of Population Data Science
Background The UK LLC Citizen Panel is a research and public engagement project which is the first proof of concept of an innovative model of learning in data research governance, proposed by Understanding Patient Data (UDPD).
Robin Flaig, Lidis Garbovan
doaj   +3 more sources

Balancing constraints and requirements in an application process [PDF]

International Journal of Population Data Science
Objectives Developing a rigorous application process for linked data within the UK Longitudinal Linkage Collaboration’s Trusted Research Environment (TRE) included balancing the requirements of >20 longitudinal studies and several data providers with ...
Stela McLachlan, Katharine Evans, Rebecca Whitehorn, Emma Turner, Jacqueline Oakley, Andy Boyd, Robin Flaig   +6 more
doaj   +2 more sources

The UK Longitudinal Linkage Collaboration: the Trusted Research Environment for data linkage in longitudinal population research [PDF]

International Journal of Population Data Science
The UK Longitudinal Linkage Collaboration: the Trusted Research Environment for data linkage in longitudinal population research We have created an unprecedented interdisciplinary infrastructure integrating data from UK-wide LPS linked to participants ...
Andy Boyd, Robin Flaig, Jacqui Oakley, Kirsteen Campbell, K Evans, Stela McLachlan, Richard Thomas, Emma Turner   +7 more
doaj   +2 more sources

Citizen Panel: Novel method for Public Involvement in data access review of linked longitudinal data [PDF]

International Journal of Population Data Science
UK Longitudinal Linkage Collaboration’s (UK LLC) Citizen Panel pilot research project aims to embed public feedback and perceptions into data access decision-making and Trusted Research Environment (TRE) design.
Lidis Garbovan, Robin Flaig
doaj   +2 more sources

Strategies for ascertaining timing of address changes in administrative data [PDF]

International Journal of Population Data Science
Addresses captured in administrative health data can facilitate the analysis of place-based exposures and their influence on health. If patients change address, hospital records are updated when individuals next use health services: precise timing of ...
Joseph Lam, Mario Cortina-Borja, Peter Christen, Richard Thomas, Robert Aldridge, Ruth Blackburn, Ruth Gilbert, Andy Boyd, Katie Harron   +8 more
doaj   +2 more sources

Co-developing resources for better public understanding of Longitudinal Population Study Data and the Law [PDF]

International Journal of Population Data Science
Introduction The legal basis for using participants' data in Longitudinal Population Studies (LPS) is complex. Laws of particular relevance are (1) UK data protection legislation, including Data Protection Act 2018 and UK General Data Protection ...
Kirsteen Campbell, Sarah Chave, Rosie Hill, Mhairi Docherty, Michael Gregg, Emma Turner, Katharine Evans, Jacqui Oakley, Stela McLachlan, Alex Bailey, Cassie Smith, Rebecca Whitehorn, Lidis Garbovan, Robin Flaig, Andy Boyd   +14 more
doaj   +2 more sources

Blueprint for Co-production: The United Kingdom Longitudinal Linkage Collaboration (UK LLC) Citizen Panel Case Study

Abstract Background: As data-intensive health research expands, questions around legitimacy, trust and social license have become central to research governance. Citizen Panels and other forms of public engagement groups are increasingly used to incorporate public perspectives into decision-making ...
Gichki S, Garbovan L, Flaig R, Boyd A.
europepmc   +2 more sources

Identifying and linking individuals participating in multiple longitudinal population studies in the UK Longitudinal Linkage Collaboration [PDF]

International Journal of Population Data Science
UK Longitudinal Linkage Collaboration (UKLLC) is the national Trusted Research Environment (TRE) for record linkage in longitudinal research, partnering with SeRP and >20 Longitudinal Population Studies (LPS).
Samuel Neale, Richard Thomas, Jacqui Oakley, Hazel Lockhart-Jones, Chris Orton, Simon Thompson, Andy Boyd   +6 more
doaj   +2 more sources

How public and participant voices have influenced the UK Longitudinal Linkage Collaboration and its Trusted Research Environment.

International Journal of Population Data Science, 2022
Objectives UK longitudinal population studies have complex governance structures and participant safeguards. As a new Trusted Research Environment (TRE) for >20 longitudinal studies, the UK Longitudinal Linkage Collaboration (UK LLC) must ensure ...
Kirsteen Campbell, Rebecca Whitehorn, Andy Boyd, Robin Flaig, Stela McLachlan, Christie Levein, Jacqueline Oakley, Sarah Chave, Michael Gregg, Della Ogunleye   +9 more
doaj   +1 more source