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.

 

• 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

• 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

• 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

• 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

• 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

• 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

• Public engagement can change your research, but how can it change your research institution? ICES Case Study

  Jenine Paul, Randy Davidson, Cheryl Johnstone, Margaret Loong, John Matecsa, Astrid Guttmann, Michael J Schull

  Published online: Sep 30, 2020

• Public Involvement & Engagement in health inequalities research on COVID-19 pandemic: a case study of CIDACS/FIOCRUZ BAHIA

  Adalton dos Anjos Fonseca, Denise Moraes Pimenta, Mariana Rodrigues Sebastião de Almeida, Raiza Tourinho Lima, Mauricio Lima Barreto, Maria Yury Travassos Ichihara

  Published online: Jun 6, 2023

• Public Involvement & Engagement in the work of a data safe haven:

  a case study of the SAIL Databank

  Kerina Jones; Sharon Heys, Rachel Thompson, Lynsey Cross, David Ford

  Published online: Aug 24, 2020

• Public involvement and engagement in primary and emergency care research

  the story from PRIME Centre Wales

  Bridie Angela Evans, Carolyn Wallace, Helen Snooks, Martin Rolph, Mary Nettle, Natalie Joseph-Williams, Sian Jones, Mari James, Robert Harris-Mayes, Lesley Griffiths, John Gallanders, Adrian Edwards

  Published online: Sep 30, 2020

• Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment

  Mhairi Aitken, Gareth McAteer, Sara Davidson, Clive Frostick, Sarah Cunningham-Burley

  Published online: Jun 26, 2018

• Public sector health analytics capacity before and after Covid-19: A case study of manager perspectives in New Brunswick, Canada

  James Ayles, Maria do Carmo Correia de Lima, Neeru Gupta

  Published online: Jul 22, 2024

• Record linkage as a vital key player for the COVID-19 syndemic -- The call for legal harmonization to overcome research challenges

  Julia Nadine Doetsch, Eero Kajantie, Vasco Dias, Marit S. Indredavik, Randi Kallar Devold, Raquel Teixeira, Jarkko Reittu, Henrique Barros

  Published online: Jun 13, 2023

• The SEEDS of Indigenous Population Health Data Linkage

  Robyn Rowe, Stephanie Russo Carroll, Chyloe Healy, Desi Rodriguez-Lonebear, Jennifer D Walker

  Published online: Jun 30, 2021

• Semantically Interoperable Census Data: Unlocking the Semantics of Census Data Using Ontologies and Linked Data

  Anderson Wong, Mark Fox, Megan Katsumi

  Published online: May 20, 2024

• Sensing pedestrian flows for real-time assessment of non-pharmaceutical policy interventions during the COVID-19 pandemic

  Jonas Klingwort, Sofie De Broe, Sven Alexander Brocker

  Published online: Jan 13, 2022

• Sharing data to better understand one of the world's most significant shared experiences: data resource profile of the longitudinal COVID-19 psychological research consortium (C19PRC) study

  Orla McBride, Sarah Butter, Todd Hartman, Jamie Murphy, Philip Hyland, Mark Shevlin, Jilly Gibson-Miller, Liat Levita, Liam Mason, Anton Martinez, Ryan McKay, Alex Lloyd, Thomas Stocks, Kate Bennett, Frédérique Vallières, Thanos Karatzias, Carmen Valiente, Carmelo Vazquez, Alba Contreras Cuevas, Marco Bertamini, Anna Panzeri, Giovanni Bruno, Richard Bentall

  Published online: Feb 17, 2022

• Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

  Jack Teng, Colene Bentley, Michael M Burgess, Kieran C O'Doherty, Kimberlyn M McGrail

  Published online: May 7, 2019

• Student Achievement Trajectories in Ontario: Creating and validating a province-wide, multi-cohort and longitudinal database

  Jeanne Sinclair, Scott Davies, Magdalena Janus

  Published online: Feb 2, 2023

• Study protocol: Generation Victoria (GenV) special care nursery registry

  Jing Wang, Yanhong Jessika Hu, Lana Collins, Anna Fedyukova, Varnika Aggarwal, Fiona Mensah, Jeanie L. Y. Cheong, Melissa Wake, and on behalf of the GenV Newborns Working Group

  Published online: Jan 10, 2024

• Supporting policy and practice in Ontario through ICES’ Applied Health Research Question (AHRQ) Program

  Lisa Ishiguro, Diana Ann An, Lesley Plumptre, Jenine Paul, Graham Mecredy, Kathy Li, Minnie Ho, Susan E. Bronskill, J. Charles Victor, Michael J. Schull, J. Michael Paterson

  Published online: Oct 28, 2021

• Tasmanian Data Linkage Unit

  Supporting innovative research, planning and policy formulation in Australia through the provision of high-quality linked-data services.

  Brian Stokes, Nadine Wiggins, Tim Albion, Alison Venn

  Published online: Feb 25, 2020