With great (statistical) power comes great responsibility: A comment on the ethics of using administrative data to investigate marginalised populations

As health data infrastructure improves, we have the opportunity to link increasing volumes of data in order to investigate important health problems. This is perhaps most pertinent when looking at the experiences and outcomes of our most disadvantaged groups, who are often invisible in data obtained...

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Main Authors: Louise Marryat, Ruchika Gajwani, Sharon Graham, Marion Henderson, Christine Puckering, Lucy Thompson, Philip Wilson, Helen Minnis
Format: Article
Language:English
Published: SAGE Publishing 2024-12-01
Series:Big Data & Society
Online Access:https://doi.org/10.1177/20539517241296058
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author Louise Marryat
Ruchika Gajwani
Sharon Graham
Marion Henderson
Christine Puckering
Lucy Thompson
Philip Wilson
Helen Minnis
author_facet Louise Marryat
Ruchika Gajwani
Sharon Graham
Marion Henderson
Christine Puckering
Lucy Thompson
Philip Wilson
Helen Minnis
author_sort Louise Marryat
collection DOAJ
description As health data infrastructure improves, we have the opportunity to link increasing volumes of data in order to investigate important health problems. This is perhaps most pertinent when looking at the experiences and outcomes of our most disadvantaged groups, who are often invisible in data obtained through primary research. Whilst these data offer enormous opportunity, there are also ethical implications in their use, which are less frequently discussed than in relation to their qualitative counterparts. As a diverse group of clinicians and academics working across public health, we share our experience and understanding of how we can improve our reflexivity in health data science and ensure that research in this area is ethically conducted in co-production with the people whose data we are using. We discuss the potential opportunities, challenges and impacts of using administrative data to investigate marginalised populations.
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issn 2053-9517
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series Big Data & Society
spelling doaj-art-e5c5ac38a03b44da995c59dba2b6be572025-08-20T02:51:15ZengSAGE PublishingBig Data & Society2053-95172024-12-011110.1177/20539517241296058With great (statistical) power comes great responsibility: A comment on the ethics of using administrative data to investigate marginalised populationsLouise Marryat0Ruchika Gajwani1Sharon Graham2Marion Henderson3Christine Puckering4Lucy Thompson5Philip Wilson6Helen Minnis7 School of Health Sciences, , Dundee, UK School of Health and Wellbeing, , Glasgow, UK School of Health and Wellbeing, , Glasgow, UK School of Social Work and Social Policy, , Glasgow, UK PSPartnership (Scotland) Ltd, UK , Aberdeen, UK Centre for Research and Education in General Practice, University of Copenhagen, Copenhagen, Denmark School of Health and Wellbeing, , Glasgow, UKAs health data infrastructure improves, we have the opportunity to link increasing volumes of data in order to investigate important health problems. This is perhaps most pertinent when looking at the experiences and outcomes of our most disadvantaged groups, who are often invisible in data obtained through primary research. Whilst these data offer enormous opportunity, there are also ethical implications in their use, which are less frequently discussed than in relation to their qualitative counterparts. As a diverse group of clinicians and academics working across public health, we share our experience and understanding of how we can improve our reflexivity in health data science and ensure that research in this area is ethically conducted in co-production with the people whose data we are using. We discuss the potential opportunities, challenges and impacts of using administrative data to investigate marginalised populations.https://doi.org/10.1177/20539517241296058
spellingShingle Louise Marryat
Ruchika Gajwani
Sharon Graham
Marion Henderson
Christine Puckering
Lucy Thompson
Philip Wilson
Helen Minnis
With great (statistical) power comes great responsibility: A comment on the ethics of using administrative data to investigate marginalised populations
Big Data & Society
title With great (statistical) power comes great responsibility: A comment on the ethics of using administrative data to investigate marginalised populations
title_full With great (statistical) power comes great responsibility: A comment on the ethics of using administrative data to investigate marginalised populations
title_fullStr With great (statistical) power comes great responsibility: A comment on the ethics of using administrative data to investigate marginalised populations
title_full_unstemmed With great (statistical) power comes great responsibility: A comment on the ethics of using administrative data to investigate marginalised populations
title_short With great (statistical) power comes great responsibility: A comment on the ethics of using administrative data to investigate marginalised populations
title_sort with great statistical power comes great responsibility a comment on the ethics of using administrative data to investigate marginalised populations
url https://doi.org/10.1177/20539517241296058
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