Personal data store ecosystems in health and social care
Personal data store ecosystems in health and social care
This paper considers how the development of personal data store ecosystems in health and social care may offer one person-centered approach to improving the ways in which individual generated and gathered data—e.g., from wearables and other personal monitoring and tracking devices—can be used for wellbeing, individual care, and research. Personal data stores aim to provide safe and secure digital spaces that enable people to self-manage, use, and share personal data with others in a way that aligns with their individual needs and preferences. A key motivation for personal data stores is to give an individual more access and meaningful control over their personal data, and greater visibility over how it is used by others. This commentary discusses meanings and motivations behind the personal data store concept—examples are provided to illustrate the opportunities such ecosystems can offer in health and social care, and associated research and implementation challenges are also examined.
Data donation, Data governance, Personal data store ecosystems, Personal data sovereignty, Privacy-by-design, Self-managing data
Carmichael, Laura
3f71fb73-581b-43c3-a261-a6627994c96e
Hall, Wendy
11f7f8db-854c-4481-b1ae-721a51d8790c
Boniface, Michael
f30bfd7d-20ed-451b-b405-34e3e22fdfba
7 February 2024
Carmichael, Laura
3f71fb73-581b-43c3-a261-a6627994c96e
Hall, Wendy
11f7f8db-854c-4481-b1ae-721a51d8790c
Boniface, Michael
f30bfd7d-20ed-451b-b405-34e3e22fdfba
Carmichael, Laura, Hall, Wendy and Boniface, Michael
(2024)
Personal data store ecosystems in health and social care.
Frontiers in Public Health, 12.
(doi:10.3389/fpubh.2024.1348044).
Abstract
This paper considers how the development of personal data store ecosystems in health and social care may offer one person-centered approach to improving the ways in which individual generated and gathered data—e.g., from wearables and other personal monitoring and tracking devices—can be used for wellbeing, individual care, and research. Personal data stores aim to provide safe and secure digital spaces that enable people to self-manage, use, and share personal data with others in a way that aligns with their individual needs and preferences. A key motivation for personal data stores is to give an individual more access and meaningful control over their personal data, and greater visibility over how it is used by others. This commentary discusses meanings and motivations behind the personal data store concept—examples are provided to illustrate the opportunities such ecosystems can offer in health and social care, and associated research and implementation challenges are also examined.
Text
PersonalDataStoreEcoystems_Preprint_17-10-2023
- Author's Original
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fpubh-12-1348044
- Version of Record
More information
Accepted/In Press date: 12 January 2024
Published date: 7 February 2024
Additional Information:
This Perspective article is part of the Research Topic: Ethical Considerations in Electronic Data in Healthcare.
Keywords:
Data donation, Data governance, Personal data store ecosystems, Personal data sovereignty, Privacy-by-design, Self-managing data
Identifiers
Local EPrints ID: 499684
URI: http://eprints.soton.ac.uk/id/eprint/499684
ISSN: 2296-2565
PURE UUID: 29ecc6bc-00d8-465a-8a12-867ea3b19a19
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Date deposited: 31 Mar 2025 16:47
Last modified: 21 Aug 2025 02:14
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