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Frontiers in Public Health
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Frontiers in Public Health
Article . 2024
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ZENODO
Preprint . 2023
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ZENODO
Preprint . 2023
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Personal data store ecosystems in health and social care

Authors: Laura Carmichael; Wendy Hall; Michael Boniface;

Personal data store ecosystems in health and social care

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.

Keywords

Health Personnel, Data Portability, privacy-by-design, Personal Data Store Ecosystems, data donation, Self-Managing Data, Humans, Data Governance, Data Donation, Ecosystem, Motivation, Social Support, personal data store ecosystems, Privacy-by-Design, Digital Health, personal data sovereignty, Public Health, data portability, Public aspects of medicine, RA1-1270, data governance, Personal Data Sovereignty

  • BIP!
    Impact byBIP!
    selected citations
    These citations are derived from selected sources.
    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    5
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Top 10%
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Top 10%
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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
5
Top 10%
Average
Top 10%
Green
gold