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.

 

• 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

• 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

• 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

• 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

• 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: Jun 15, 2023

• 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

• The Center for Data and Knowledge Integration for Health (CIDACS)

  An Experience of Linking Health and Social Data in Brazil

  Mauricio Lima Barreto, Laura Rodrigues, Spiros Denaxas, George Barbosa, M. Sanni Ali, Manoel Barral-Netto, Gerson Penna, Robespierre Pita, Carlos Teles, Roberto P Carreiro, Rosemeire Fiaccone, Liliana Cabral, Marcos Ennes Barreto, Bethania de Araujo Almeida, Maria Yuri Ichihara, Liam Smeeth

  Published online: Nov 20, 2019

• The changing face of Australian data reforms: Impact on pharmacoepidemiology research

  Juliana de Oliveira Costa, Claudia Bruno, Andrea L Schaffer, Smriti Raichand, Emily A Karanges , Sallie-Anne Pearson

  Published online: Apr 15, 2021

• The impact of cross-jurisdictional patient flows on ascertainment of hospitalisations and cardiac procedures for ST-segment-elevation myocardial infarction in an Australian population.

  Branislav Igic, Rachel Farber, Maria Alfaro-Ramirez, Michael A Nelson , Lee K Taylor

  Published online: Feb 8, 2023

• The International Population Data Linkage Network – Banff and Beyond

  William A Ghali, Michael J Schull

  Published online: Aug 28, 2018

• The Medicines Intelligence Centre of Research Excellence: Co-creating real-world evidence to support the evidentiary needs of Australian regulators and payers.

  Nicole Pratt, Ximena Camacho, Claire Vajdic, Louisa Degenhardt, Tracey-Lea Laba, Jodie Hillen, Christopher Etherton-Beer , David Preen, Louisa Jorm, Natasha Donnolley, Alys Havard, Sallie-Ann Pearson

  Published online: Jun 13, 2022

• The Population Health Research Network - Population Data Centre Profile

  Felicity Flack, Merran Smith

  Published online: Nov 20, 2019

• The practicalities of adapting UK maternity clinical information systems for observational research: Experiences of the POOL study

  Fiona Lugg-Widger, Christian Barlow, Rebecca Cannings-John, Chris Gale, Nicola Houlding, Rebecca Milton, Rachel Plachcinski, Michael Robling, Julia Sanders

  Published online: Aug 7, 2023

• The Research Data Centre of the German Federal Employment Agency at the Institute for Employment Research (RDC-IAB)

  Linked Microdata for Labour Market Research

  Manfred Antoni, Alexandra Schmucker

  Published online: Nov 20, 2019

• Trust, security and public interest: Striking the balance

  A review of previous literature on public attitudes towards the sharing, linking and use of administrative data for research

  Elizabeth Waind

  Published online: Dec 11, 2020

• Understanding data provenance when using electronic medical records for research: Lessons learned from the Deliver Primary Healthcare Information (DELPHI) database

  Jason Edward Black, Amanda L. Terry, Sonny Cejic, Thomas R Freeman, Daniel J. Lizotte, Scott McKay, Mark Speechley, Bridget Ryan

  Published online: Sep 28, 2023

• The Use of administrative record linkage to examine patterns of universal early childhood health and education service use from birth to Kindergarten (age 4 years) and developmental vulnerability in the Preparatory Year (age 5 years) in Tasmania, Australia.

  Catherine Louise Taylor, Daniel Christensen, Alison Venn, David Preen, Joel Stafford, Emily Hansen, Kim Jose, Stephen Zubrick

  Published online: Jan 19, 2022

• Using data linkage to monitor COVID-19 vaccination

  Development of a vaccination linked data repository

  Tom Eitelhuber, Sera Ngeh, Lauren Bloomfield, Bhaval Chandaria, Paul Effler

  Published online: Dec 15, 2022

• Validating a novel deterministic privacy-preserving record linkage between administrative & clinical data: applications in stroke research

  Alisia Southwell, Susan E. Bronskill, Tom Gee, Brendan Behan, Susan G. Evans, Tom Mikkelsen, Elizabeth Theriault, Kirk Nylen, Shannon Lefaivre, Nelson Chong, Mahmoud Azimaee, Natasa Tusevljak, Douglas Lee, Richard H. Swartz

  Published online: Nov 23, 2022

• Validating the QCOVID risk prediction algorithm for risk of mortality from COVID-19 in the adult population in Wales, UK

  Jane Lyons, Vahé Nafilyan, Ashley Akbari, Gareth Davies, Rowena Griffiths, Ewen Harrison, Julia Hippisley-Cox, Joe Hollinghurst, Kamlesh Khunti, Laura North, Aziz Sheikh, Fatemeh Torabi, Ronan Lyons

  Published online: Feb 16, 2022

• Variation in hospital cost trajectories at the end of life by age, multimorbidity and cancer type

  Katharina Diernberger, Xhyljeta Luta, Joanna Bowden, Joanne Droney, Elizabeth Lemmon, Giovanni Tramonti, Bethany Shinkins, Ewan Gray, Joachim Marti, Peter S. Hall

  Published online: Jan 16, 2023

• VIKING II, a Worldwide Observational Cohort of Volunteers with Northern Isles Ancestry

  Shona Kerr, Rachel Edwards, David Buchanan, John Dean, Zosia Miedzybrodzka, James Wilson

  Published online: May 16, 2023

• What makes administrative data research-ready?

  A systematic review and thematic analysis of published literature

  Louise Mc Grath-Lone, Matthew A Jay, Ruth Blackburn, Emma Gordon, Ania Zylbersztejn, Linda Wijlaars, Ruth Gilbert

  Published online: Jun 20, 2022