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The social data foundation model: facilitating health and social care transformation through datatrust services

The social data foundation model: facilitating health and social care transformation through datatrust services
The social data foundation model: facilitating health and social care transformation through datatrust services
Turning the wealth of health and social data into insights to promote better public health, whilst enabling more effective personalised care, is critically important for society. In particular, social determinants of health have a significant impact on individual health, well-being, and inequalities in health. However, concerns around accessing and processing such sensitive data, and linking different datasets, involves significant challenges, not least to demonstrate trustworthiness to all stakeholders. Emerging datatrust services provide an opportunity to address key barriers to health and social care data linkage schemes, specifically a loss of control experienced by data providers, including the difficulty to maintain a remote re-identification risk over time, and the challenge of establishing and maintaining a social licence. Datatrust services are a socio-technical evolution that advances databases and data management systems, and brings together stakeholder-sensitive data governance mechanisms with data services to create a ‘Trusted Research Environment’ (TRE). In this paper, we explore: the requirements for datatrust services; a proposed implementation – the Social Data Foundation (SDF); and, an illustrative test case. Moving forward, such an approach would help incentivise, accelerate, and join up the sharing of regulated data, and the use of generated outputs safely amongst stakeholders, including healthcare providers, social care providers, researchers, public health authorities, and citizens.
Healthcare and Social Care, Data Governance Models, Datatrust services, Data Stewardship, Data Institutions
Boniface, Michael
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Carmichael, Laura
3f71fb73-581b-43c3-a261-a6627994c96e
Hall, Wendy
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Pickering, Brian
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Stalla-Bourdillon, Sophie
c189651b-9ed3-49f6-bf37-25a47c487164
Taylor, Steve
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Boniface, Michael
f30bfd7d-20ed-451b-b405-34e3e22fdfba
Carmichael, Laura
3f71fb73-581b-43c3-a261-a6627994c96e
Hall, Wendy
11f7f8db-854c-4481-b1ae-721a51d8790c
Pickering, Brian
225088d0-729e-4f17-afe2-1ad1193ccae6
Stalla-Bourdillon, Sophie
c189651b-9ed3-49f6-bf37-25a47c487164
Taylor, Steve
9ee68548-2096-4d91-a122-bbde65f91efb

Boniface, Michael, Carmichael, Laura, Hall, Wendy, Pickering, Brian, Stalla-Bourdillon, Sophie and Taylor, Steve (2021) The social data foundation model: facilitating health and social care transformation through datatrust services. Author's Original. (Submitted)

Record type: Article

Abstract

Turning the wealth of health and social data into insights to promote better public health, whilst enabling more effective personalised care, is critically important for society. In particular, social determinants of health have a significant impact on individual health, well-being, and inequalities in health. However, concerns around accessing and processing such sensitive data, and linking different datasets, involves significant challenges, not least to demonstrate trustworthiness to all stakeholders. Emerging datatrust services provide an opportunity to address key barriers to health and social care data linkage schemes, specifically a loss of control experienced by data providers, including the difficulty to maintain a remote re-identification risk over time, and the challenge of establishing and maintaining a social licence. Datatrust services are a socio-technical evolution that advances databases and data management systems, and brings together stakeholder-sensitive data governance mechanisms with data services to create a ‘Trusted Research Environment’ (TRE). In this paper, we explore: the requirements for datatrust services; a proposed implementation – the Social Data Foundation (SDF); and, an illustrative test case. Moving forward, such an approach would help incentivise, accelerate, and join up the sharing of regulated data, and the use of generated outputs safely amongst stakeholders, including healthcare providers, social care providers, researchers, public health authorities, and citizens.

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2021June07_PrePrint_SDFModel_v0.1 - Author's Original
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More information

Submitted date: 7 June 2021
Keywords: Healthcare and Social Care, Data Governance Models, Datatrust services, Data Stewardship, Data Institutions

Identifiers

Local EPrints ID: 449699
URI: http://eprints.soton.ac.uk/id/eprint/449699
PURE UUID: f9507392-7269-4135-a477-a40ea78eac6a
ORCID for Michael Boniface: ORCID iD orcid.org/0000-0002-9281-6095
ORCID for Laura Carmichael: ORCID iD orcid.org/0000-0001-9391-1310
ORCID for Wendy Hall: ORCID iD orcid.org/0000-0003-4327-7811
ORCID for Brian Pickering: ORCID iD orcid.org/0000-0002-6815-2938
ORCID for Steve Taylor: ORCID iD orcid.org/0000-0002-9937-1762

Catalogue record

Date deposited: 11 Jun 2021 16:30
Last modified: 15 Jun 2021 01:45

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