Strengthening health data governance : new equity and rights-based principles

Abstract: Purpose – This paper introduces a new set of equity and rights-based principles for health data governance (HDG) and makes the case for their adoption into global, regional and national policy and practice. Design/methodology/approach – This paper discusses the need for a unified approac...

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Autores principales: Holly, Louise, Thom, Shannon, Elzemety, Mohamed, Murage, Beatrice, Mathieson, Kirsten, Iñigo Petralanda, Maria Isabel
Formato: Artículo
Lenguaje:Inglés
Publicado: Emerald Publishing Limited 2023
Materias:
SALUD PÚBLICA
PARTICIPACION SOCIAL
USUARIOS
SEGURIDAD INFORMATICA
POLITICA SANITARIA
DERECHO A LA SALUD
Acceso en línea:https://repositorio.uca.edu.ar/handle/123456789/17417
Aporte de:
Repositorio Institucional de la Universidad Católica Argentina (UCA) de Universidad Católica Argentina
id I33-R139-123456789-17417
record_format dspace
spelling I33-R139-123456789-174172023-11-08T05:01:25Z Strengthening health data governance : new equity and rights-based principles Holly, Louise Thom, Shannon Elzemety, Mohamed Murage, Beatrice Mathieson, Kirsten Iñigo Petralanda, Maria Isabel SALUD PÚBLICA PARTICIPACION SOCIAL USUARIOS SEGURIDAD INFORMATICA POLITICA SANITARIA DERECHO A LA SALUD Abstract: Purpose – This paper introduces a new set of equity and rights-based principles for health data governance (HDG) and makes the case for their adoption into global, regional and national policy and practice. Design/methodology/approach – This paper discusses the need for a unified approach to HDG that maximises the value of data for whole populations. It describes the unique process employed to develop a set of HDG principles. The paper highlights lessons learned from the principle development process and proposes steps to incorporate them into data governance policies and practice. Findings – More than 200 individuals from 130 organisations contributed to the development of the HDG principles, which are clustered around three interconnected objectives of protecting people, promoting health value and prioritising equity. The principles build on existing norms and guidelines by bringing a human rights and equity lens to HDG. Practical implications – The principles offer a strong vision for HDG that reaps the public good benefits of health data whilst safeguarding individual rights. They can be used by governments and other actors as a guide for the equitable collection and use of health data. The inclusive model used to develop the principles can be replicated to strengthen future data governance approaches. Originality/value – The article describes the first bottom-up effort to develop a set of principles for HDG. 2023-11-07T09:37:46Z 2023-11-07T09:37:46Z 2023 Artículo Holly, L. et al. Strengthening health data governance : new equity and rights-based principles [en línea]. International Journal of Health Governance. 2023, 28(3) doi: 10.1108/IJHG-11-2022-0104. Disponible en: https://repositorio.uca.edu.ar/handle/123456789/17417 2059-4631 https://repositorio.uca.edu.ar/handle/123456789/17417 10.1108/IJHG-11-2022-0104 eng Acceso abierto http://creativecommons.org/licenses/by-nc-sa/4.0/ application/pdf Emerald Publishing Limited International Journal of Health Governance. 2023, 28(3)
institution Universidad Católica Argentina
institution_str I-33
repository_str R-139
collection Repositorio Institucional de la Universidad Católica Argentina (UCA)
language Inglés
topic SALUD PÚBLICA
PARTICIPACION SOCIAL
USUARIOS
SEGURIDAD INFORMATICA
POLITICA SANITARIA
DERECHO A LA SALUD
spellingShingle SALUD PÚBLICA
PARTICIPACION SOCIAL
USUARIOS
SEGURIDAD INFORMATICA
POLITICA SANITARIA
DERECHO A LA SALUD
Holly, Louise
Thom, Shannon
Elzemety, Mohamed
Murage, Beatrice
Mathieson, Kirsten
Iñigo Petralanda, Maria Isabel
Strengthening health data governance : new equity and rights-based principles
topic_facet SALUD PÚBLICA
PARTICIPACION SOCIAL
USUARIOS
SEGURIDAD INFORMATICA
POLITICA SANITARIA
DERECHO A LA SALUD
description Abstract: Purpose – This paper introduces a new set of equity and rights-based principles for health data governance (HDG) and makes the case for their adoption into global, regional and national policy and practice. Design/methodology/approach – This paper discusses the need for a unified approach to HDG that maximises the value of data for whole populations. It describes the unique process employed to develop a set of HDG principles. The paper highlights lessons learned from the principle development process and proposes steps to incorporate them into data governance policies and practice. Findings – More than 200 individuals from 130 organisations contributed to the development of the HDG principles, which are clustered around three interconnected objectives of protecting people, promoting health value and prioritising equity. The principles build on existing norms and guidelines by bringing a human rights and equity lens to HDG. Practical implications – The principles offer a strong vision for HDG that reaps the public good benefits of health data whilst safeguarding individual rights. They can be used by governments and other actors as a guide for the equitable collection and use of health data. The inclusive model used to develop the principles can be replicated to strengthen future data governance approaches. Originality/value – The article describes the first bottom-up effort to develop a set of principles for HDG.
format Artículo
author Holly, Louise
Thom, Shannon
Elzemety, Mohamed
Murage, Beatrice
Mathieson, Kirsten
Iñigo Petralanda, Maria Isabel
author_facet Holly, Louise
Thom, Shannon
Elzemety, Mohamed
Murage, Beatrice
Mathieson, Kirsten
Iñigo Petralanda, Maria Isabel
author_sort Holly, Louise
title Strengthening health data governance : new equity and rights-based principles
title_short Strengthening health data governance : new equity and rights-based principles
title_full Strengthening health data governance : new equity and rights-based principles
title_fullStr Strengthening health data governance : new equity and rights-based principles
title_full_unstemmed Strengthening health data governance : new equity and rights-based principles
title_sort strengthening health data governance : new equity and rights-based principles
publisher Emerald Publishing Limited
publishDate 2023
url https://repositorio.uca.edu.ar/handle/123456789/17417
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AT thomshannon strengtheninghealthdatagovernancenewequityandrightsbasedprinciples
AT elzemetymohamed strengtheninghealthdatagovernancenewequityandrightsbasedprinciples
AT muragebeatrice strengtheninghealthdatagovernancenewequityandrightsbasedprinciples
AT mathiesonkirsten strengtheninghealthdatagovernancenewequityandrightsbasedprinciples
AT inigopetralandamariaisabel strengtheninghealthdatagovernancenewequityandrightsbasedprinciples
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