Results 1 to 10 of about 593,692 (308)

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

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   +1 more source

A novel protocol for a "Citizen Panel" for diverse Public and Participant Involvement in the review and development of the process to access data in the UK Longitudinal Linkage Collaboration Trusted Research Environment

International Journal of Population Data Science
Background Researchers can apply to UK Longitudinal Linkage Collaboration (UK LLC) to access Longitudinal Population Study (LPS) data linked to health, non-health administrative and geo-environmental data.
Lidis Garbovan, Betty O. Idemudia, Robin Flaig, Kirsteen Campbell, Katharine Evans, Andy Boyd, Sarah Cunningham-Burley, Emma L. Turner   +7 more
doaj   +1 more source

Identifying children with Cystic Fibrosis in population-scale routinely collected data in Wales

International Journal of Population Data Science, 2020
Introduction The challenges in identifying a cohort of people with a rare condition can be addressed by routinely collected, population-scale electronic health record (eHR) data, which provide large volumes of data at a national level.
Rowena Griffiths, Daniela K Schlüter, Ashley Akbari, Rebecca Cosgriff, David Tucker, David Taylor-Robinson   +5 more
doaj   +1 more source

Co-development and Adoption of Transparency in Data Access Standards: Process, Implementation, and Impact

International Journal of Population Data Science
Objectives This initiative aimed to enhance transparency in health data access processes by co-developing and implementing clear standards. The goal was to improve public trust and understanding, streamline governance, and promote meaningful public ...
Ester Bellavia, Alan Holcroft, Yemi Macaulay, Doreen Tembo, Cassie Smith, Andy Boyd   +5 more
doaj   +1 more source

Demystifying probabilistic linkage

International Journal of Population Data Science, 2018
Many of the distinctions made between probabilistic and deterministic linkage are misleading. While these two approaches to record linkage operate in different ways and can produce different outputs, the distinctions between them are more a result of how
James C Doidge, Katie Harron
doaj   +1 more source

Embedding Public Voices in Data Governance: Insights from the GUARDS Principles Consultation

International Journal of Population Data Science
Objectives This project explored public perspectives on the GUARDS Principles, an overarching governance framework for the population data research community, which builds on existing good practice guidance.
Ester Bellavia, Rachel Brophy, Sonia Patton, Doreen Tembo, Cassie Smith, Andy Boyd   +5 more
doaj   +1 more source

High quality linked data for stroke obtained using non-government clinical registry and routinely collected hospital and death data

International Journal of Population Data Science, 2018
Introduction Recent advances in data linkage infrastructure in Australia mean that data can be linked based on various identifiers across datasets. In a first for Australia, we tested the feasibility of linking data between a clinical quality disease ...
Monique Kilkenny, Joosup Kim, Nadine Andrew, Vijaya Sundararajan, Amanda Thrift, Judith Katzenellenbogen, Felicity Flack, Melina Gattellari, James Boyd, Phil Anderson, Natasha Lannin, Mark Sipthorp, Ying Chen, Trisha Johnston   +13 more
doaj   +1 more source

Improving record linkage performance in the presence of missing linkage data

Journal of Biomedical Informatics, 2014
Existing record linkage methods do not handle missing linking field values in an efficient and effective manner. The objective of this study is to investigate three novel methods for improving the accuracy and efficiency of record linkage when record linkage fields have missing values.By extending the Fellegi-Sunter scoring implementations available in
Toan C. Ong, Michael V. Mannino, Lisa M. Schilling, Michael G. Kahn   +3 more
openaire   +2 more sources

Insights from linking routinely collected data across Australian health jurisdictions: a case study of end-of-life health service use

Public Health Research & Practice, 2018
Objectives: The jurisdictional nature of routinely collected health data in Australia has created challenges for linking data across state/territory and federal government boundaries.
Julia M Langton, David Goldsbury, Preeyaporn Srasuebkul, Jane M Ingham, Dianne L O’Connell, Sallie-Anne Pearson   +5 more
doaj   +1 more source

Evaluation of record linkage of two large administrative databases in a middle income country: stillbirths and notifications of dengue during pregnancy in Brazil

BMC Medical Informatics and Decision Making, 2017
Background Due to the increasing availability of individual-level information across different electronic datasets, record linkage has become an efficient and important research tool. High quality linkage is essential for producing robust results.
Enny S Paixão, Katie Harron, Kleydson Andrade, Maria Glória Teixeira, Rosemeire L. Fiaccone, Maria da Conceição N. Costa, Laura C. Rodrigues   +6 more
doaj   +1 more source