Data use for positive impact on individuals and populations

This is all about how data is being used to improve lives and make positive change for public good. It also encompasses the science and practice of public engagement.

 

• Developing a population data science approach to assess increased risk of COVID-19 associated with attending large events

  Mark Drakesmith, Gemma Hobson, Gareth John, Emily Steggall, Ashley Gould, John Parkinson, Daniel Rhys Thomas

  Published online: Aug 3, 2022

• Developing and evaluating a model of public involvement and engagement embedded in a national longitudinal study: HealthWise Wales

  Julia Townson, Jan Davies, Lisa Hurt, Dr, Pauline Ashfield-Watt, Dr, Shantini Paranjothy, Professor

  Published online: Apr 16, 2021

• Developmental Impacts of the COVID-19 Pandemic on Young Children: A Conceptual Model for Research with Integrated Administrative Data Systems

  Heather L. Rouse, Rebecca J. Bulotsky Shearer, Sydney S. Idzikowski, Amy Hawn Nelson, Mark Needle, Matthew F. Katz , Jhonelle Bailey, Justin T. Lane, Emily Berkowitz, Sharon Zanti, Astrid Pena , Maggie Reeves

  Published online: Oct 7, 2021

• DLforum – A multidisciplinary online discussion forum for data linkage researchers and practitioners

  https://dmm.anu.edu.au/DLforum/

  Peter Christen, Thilina Ranbaduge, Dinusha Vatsalan

  Published online: Feb 20, 2018

• Early child development in England: Cross-sectional analysis of ASQ®-3 records from the 2-2½-year universal health visiting review using national administrative data (Community Service Dataset, CSDS)

  Jayu Jung, Sarah Cattan, Claire Powell, Jane Barlow, Mengyun Liu, Amanda Clery, Louise Mc Grath-Lone, Catherine Bunting, Jenny Woodman

  Published online: Feb 27, 2025

• Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility

  Sarah K. Harding, Beverley Samways, Amy Dillon, Sandra Butcher, Andy Boyd, Raja Mukherjee, Penny A. Cook, Cheryl McQuire

  Published online: Sep 19, 2024

• Establishment of a birth-to-education cohort of 1 million Palestinian refugees using electronic medical records and electronic education records

  Zeina Jamaluddine, Akihiro Seita, Ghada Ballout, Husam Al-Fudoli, Gloria Paolucci, Shatha Albaik, Rami Ibrahim, Miho Sato, Hala Ghattas, Oona Campbell

  Published online: Oct 24, 2023

• Estimating surge in COVID-19 cases, hospital resources and PPE demand with the interactive and locally-informed COVID-19 Health System Capacity Planning Tool

  Olga Krylova, Omar Kazmi, Hui Wang, Kelvin Lim, Chloe Logar-Henderson, Katerina Gapanenko

  Published online: Apr 6, 2022

• Evaluating the “right@home” randomised trial of nurse home visiting using linked administrative data at school transition

  Anna Price, Jiaxin Zhang, Sharon Goldfeld, John Carlin, Fiona Mensah

  Published online: May 16, 2024

• Evaluating the accuracy of data extracted from electronic health records into MedicineInsight, a national Australian general practice database

  Benjamin Daniels, Alys Havard, Rimma Myton, Cynthia Lee, Kendal Chidwick

  Published online: Jun 29, 2022

• Evaluation of the ASSIGN open-source deterministic address-matching algorithm for allocating Unique Property Reference Numbers to general practitioner-recorded patient addresses

  Gill Harper, David Stables, Paul Simon, Zaheer Ahmed, Kelvin Smith, John Robson, Carol Dezateux

  Published online: Dec 8, 2021

• Four Questions to Guide Decision-Making for Data Sharing and Integration

  Amy Hawn Nelson, Sharon Zanti

  Published online: Oct 4, 2023

• A Framework for Centering Racial Equity Throughout the Administrative Data Life Cycle

  Amy L Hawn Nelson, Sharon Zanti

  Published online: Sep 30, 2020

• Health data social licence: An inclusive process to learn more about the perspectives of experienced public and patient advisors

  Julia Burt, Annabelle Cumyn, Roxanne Dault, Louise Belzile, Louise Binder, Cris Carter, Paul Carter, Brian Cho, Clara Dallaire, André Gaudreau, Frédéric L'Hérault, Annette McKinnon, Danièle Remy, Leah Stephenson, Cindy Yip, P Alison Paprica

  Published online: Apr 17, 2024

• How to analyze and link patient experience surveys with administrative data to drive health service improvement -- examples from Alberta, Canada

  Kyle Kemp, Paul Fairie, Brian Steele, Maria Santana

  Published online: Oct 13, 2022

• I-SIRch: AI-powered concept annotation tool for equitable extraction and analysis of safety insights from maternity investigations

  Mohit Kumar Singh, Georgina Cosma, Patrick Waterson, Jonathan Back, Gyuchan Thomas Jun

  Published online: Nov 20, 2024

• ICES: Data, Discovery, Better Health

  Michael J Schull, Mahmoud Azimaee, Marcel Marra, Rosario G Cartagena, Marian J Vermeulen, Minnie M Ho, Astrid Guttmann

  Published online: Mar 11, 2020

• Identification of International Society on Thrombosis and Haemostasis major and clinically relevant non-major bleed events from electronic health records: a novel algorithm to enhance data utilisation from real-world sources

  Alexander Hartenstein, Khaled Abdelgawwad, Frank Kleinjung, Stephen Privitera, Thomas Viethen, Tatsiana Vaitsiakhovich

  Published online: Oct 2, 2023

• Impact of COVID-19 pandemic on community medication dispensing: a national cohort analysis in Wales, UK

  Fatemeh Torabi, Julian Halcox, Andrew Morris, Neil Jenkins, Daniel Harris, Rowena Griffiths, Gareth Davies, Mike Gravenor, Hoda Abbasizanjani, Stuart Bedston, Jane Lyons, Laura North, Ashley Akbari, Ronan A Lyons

  Published online: Apr 28, 2022

• Impact through Engagement

  Co-production of administrative data research and the approach of the Administrative Data Research Centre Northern Ireland.

  Elizabeth Nelson, Frances Burns

  Published online: Nov 10, 2020

• Improving opportunities for data linkage within Children Looked After administrative records in Wales

  Grace A. Bailey, Alex Lee, Saira Ahmed, Ieuan Scanlon, Laura E. Cowley, Amy Stuart, Ian Farr, Caroline Brooks, Laura North, Lucy J. Griffiths

  Published online: Feb 19, 2025

• Indigenizing our Research

  Indigenous Community Leadership in HIV Epidemiology Research

  Valerie Nicholson, Andreea Bratu, Alison R McClean, Simran Jawanda, Niloufar Aran, Knighton Hillstrom, Evelyn Hennie, Claudette Cardinal, Elizabeth Benson, Kerrigan Beaver, Anita C Benoit, Bob Hogg, Denise Jaworsky, Building More Bridges Research Team

  Published online: May 20, 2021

• Influencing policy and practice is work in progress

  Elizabeth Nelson, Dermot O'Reilly

  Published online: Feb 3, 2022

• INTEGRATE: A methodology to facilitate critical care research using multiple, linked electronic health records at population scale.

  Rowena Griffiths, Laura Herbert, Ashley Akbari, Rowena Bailey, Joe Hollinghurst, Richard Pugh, Tamas Szakmany, Fatemeh Torabi, Ronan A Lyons

  Published online: Jul 18, 2022

• Involving service users in Births and their outcomes: a retrospective birth cohort data linkage study analysing daily, weekly and yearly cycles and their implications for the NHS

  Mary Newburn, Miranda Scanlon, Rachel Plachcinski, Alison Jill Macfarlane

  Published online: Nov 2, 2020

• It takes a village: Influencing policy and practice to prevent alcohol use in pregnancy and promote better outcomes for individuals living with Fetal Alcohol Spectrum Disorder

  Amy Finlay-Jones, Elizabeth Elliott, Astrid Chapman, Jane Halliday, Heather Jones, Natalie Kippin, Narelle Mullan, Hayley Passmore, Tracy Reibel, Neil Reynolds, Martyn Symons, Tracey W Tsang, Rochelle Watkins, Carol Bower

  Published online: Mar 2, 2022

• Kids' Environment and Health Cohort: Database Protocol

  Selin Akaraci, Alison Macfarlane, Amal Rammah, Emilie Courtin, Esther Lewis, Faith Miller, Jason Powell-Bavester, Jessica Mitchell, Joana Cruz, Matthew Lilliman, Niloofar Shoari, Samantha Hajna, Steven Cummins, Tolu Adedire, Vahe Nafilyan, Pia Hardelid

  Published online: Feb 13, 2025

• Laying the Foundation for Real-World Evidence Studies of Psoriatic Disease in Newfoundland and Labrador

  Winifred Badaiki, Evelyn Pyper, Kendra Lester, Janelle Skeard, Michelle Penney, Janey Shin, Brenda Fisher, Huong Hew, Susanne Gulliver, Wayne Gulliver, Proton Rahman

  Published online: Sep 2, 2022

• Length of Stay in ICU of Covid-19 Patients in England, March - May 2020

  Nick Shryane, Maria Pampaka, Andrea Lisette Aparicio Castro, Shazaad Ahmad, Mark Elliot, Ji Hye Kim, Jennifer Murphy, Diego Andres Perez Ruiz, Wendy Olsen, Arkadiusz Wiśniowski

  Published online: Mar 3, 2021

• Linking education and hospital data in England: linkage process and quality

  Nicolás Libuy, Katie Harron, Ruth Gilbert, Richard Caulton, Ellen Cameron, Ruth Blackburn

  Published online: Sep 16, 2021

• Linking migration and hospital data in England: linkage process and evaluation of bias

  Rachel Burns, Sacha Wyke, Yamina Boukari, Sirinivasa Vittal Katikireddi, Dominik Zenner, Ines Campos-Matos, Katie Harron, Robert Aldridge

  Published online: Feb 12, 2024

• Linking pre- and post-adoption records for research in anonymised form in a data safe haven:

  legal implications and support for a social licence

  Kerina Jones, Sharon Heys, Rachel Thompson, Lucy Griffiths, Rhodri Johnson, Alex Lee, David Ford, Karen Broadhurst

  Published online: Oct 23, 2020

• Local area variation in health visiting contacts across England for children under age 5: a cross-sectional analysis of administrative data in England 2018-2020

  Mengyun Liu, Jenny Woodman, Louise Mc Grath-Lone, Amanda Clery, Catherine Bunting, Samantha Bennett, Sally Kendall, Jennifer Kirman, Helen Weatherly, Jane Barlow, Helen Bedford, Katie Harron

  Published online: May 13, 2024

• Making the most of cybercrime and fraud crime report data: a case study of UK Action Fraud

  Sara Giro Correia

  Published online: May 11, 2022

• Mapping Population Vulnerability and Community Support during COVID-19

  a case study from Wales

  Nina H Di Cara, Jiao Song, Valerio Maggio, Christopher Moreno-Stokoe, Alastair R Tanner, Benjamin Woolf, Oliver S P Davis, Alisha Davies

  Published online: Apr 19, 2021

• Maternal disability and newborn discharge to social services: a population-based study

  Claire Grant, Yona Lunsky, Astrid Guttmann, Simone N. Vigod, Isobel Sharpe, Kinwah Fung, Hilary K. Brown

  Published online: Jul 4, 2024

• Maternity care experiences and outcomes of people seeking sanctuary in Wales: a data linkage study protocol

  Alix Bukkfalvi-Cadotte, Ashra Khanom, Amy Brown, Helen Snooks

  Published online: Sep 11, 2024

• Measuring serious violence perpetration: comparison of police-recorded and self-reported data in a UK cohort

  Rosaleen P. Cornish, Alison Teyhan, Kate Tilling, John Macleod, Iain Brennan

  Published online: Feb 4, 2025

• Mother and Infant Research Electronic Data Analysis (MIREDA): A protocol for creating a common data model for federated analysis of UK birth cohorts and the life course

  Mike Seaborne, Hope Jones, Neil Cockburn, Stevo Durbaba, Arturo González-Izquierdo, Amy Hough, Dan Mason, Carlos Sánchez-Soriano, Chris Orton, Armando Méndez-Villalon, Tom Giles, David Ford, Phillip Quinlan, Krish Nirantharakumar, Lucilla Poston, Rebecca Reynolds, Gillian Santorelli, Sinead Brophy

  Published online: Sep 12, 2024

• Not in Employment, Education or Training (NEET); more than a youth policy issue

  Associate Professor Francis Mitrou, Professor Michele Haynes, Associate Professor Francisco Perales, Emeritus Professor Stephen R Zubrick, Professor Janeen Baxter

  Published online: Sep 21, 2021

• Notches on the dial: a call to action to develop plain language communication with the public about users and uses of health data

  P Alison Paprica, Kimberlyn McGrail, Michael J Schull

  Published online: Aug 5, 2019

• Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository

  Matthew A Jay, Kate Lewis, Difei Shi, Rebecca Langella, Tony Stone, Sorcha Ní Chobhthaigh, Ania Zylbersztejn, Ruth Blackburn, Katie Harron

  Published online: May 13, 2025

• Participant acceptability of digital footprint data collection strategies: an exemplar approach to participant engagement and involvement in the ALSPAC birth cohort study.

  Kate Shiells, Nina Di Cara, Anya Skatova, Oliver Davis, Claire Haworth, Andy Skinner, Richard Thomas, Alastair Tanner, John Macleod, Nicholas Timpson, Andy Boyd

  Published online: Mar 16, 2022

• Population Data BC: Supporting population data science in British Columbia

  Tavinder Kaur Ark, Sarah Kesselring, Brent Hills, Kim McGrail

  Published online: Mar 26, 2020

• Population Data Centre Profile - The Western Australian Data Linkage Branch

  Steve Hodges, Tom Eitelhuber, Alexandra Merchant, Janine Alan

  Published online: Mar 11, 2020

• Population Data Centre Profile: SA NT DataLink (South Australia and Northern Territory)

  Matthias Schneider, Christopher Gordon Radbone, Stacy Ann Vasquez, Miroslav Palfy, Andrew Kristjan Stanley

  Published online: Dec 5, 2019

• Population Data Centre Profile: The Manitoba Centre for Health Policy

  Alan Katz, Jennifer Enns, Mark Smith, Charles Burchill, Ken Turner, Dave Towns

  Published online: Feb 25, 2020

• Population Data Centre Profiles: Centre for Data Linkage

  James H Boyd, Sean Randall, Adrian P Brown, Max Maller, Davie Botes, Margo Gillies, Anna Ferrante

  Published online: Mar 11, 2020

• A population level study of SARS-CoV-2 prevalence amongst people experiencing homelessness in Wales, UK

  Ian Thomas, Peter Mackie

  Published online: Dec 2, 2021

• A Position Statement on Population Data Science:

  The science of data about people

  Kim McGrail, Ros Moran, Christine O'Keefe, David Preen, Hude Quan, Claudia Sanmartin, Michael Schull, Mark Smith, Christine Williams, Tyler Williamson, Grant Wyper, Rachael Moorin, Hye-Chung Kum, Kerina Jones, Ashley Akbari, Tell Bennett, Andrew Boyd, Fabrizio Carinci, Xinjie Cui, Spiros Denaxas, Nadine Dougall, David Ford, Russell S Kirby, Milton Kotelchuck

  Published online: Feb 22, 2018