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, while enabling more effective personalized care, is critically important for society. In particular, social determinants of health have a significant impact on individual health, well-being, and inequalities...
| Main Authors: | , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Cambridge University Press
2022-01-01
|
| Series: | Data & Policy |
| Subjects: | |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2632324922000013/type/journal_article |
| _version_ | 1811156523554963456 |
|---|---|
| author | Michael Boniface Laura Carmichael Wendy Hall Brian Pickering Sophie Stalla-Bourdillon Steve Taylor |
| author_facet | Michael Boniface Laura Carmichael Wendy Hall Brian Pickering Sophie Stalla-Bourdillon Steve Taylor |
| author_sort | Michael Boniface |
| collection | DOAJ |
| description | Turning the wealth of health and social data into insights to promote better public health, while enabling more effective personalized 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, involve 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 reidentification risk over time, and the challenge of establishing and maintaining a social license. Datatrust services are a sociotechnical 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. In this article, we explore the requirements for datatrust services, a proposed implementation—the Social Data Foundation, and an illustrative test case. Moving forward, such an approach would help incentivize, 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. |
| first_indexed | 2024-04-10T04:52:03Z |
| format | Article |
| id | doaj.art-e10e983926024a5582437e299f9cd15b |
| institution | Directory Open Access Journal |
| issn | 2632-3249 |
| language | English |
| last_indexed | 2024-04-10T04:52:03Z |
| publishDate | 2022-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Data & Policy |
| spelling | doaj.art-e10e983926024a5582437e299f9cd15b2023-03-09T12:31:38ZengCambridge University PressData & Policy2632-32492022-01-01410.1017/dap.2022.1The Social Data Foundation model: Facilitating health and social care transformation through datatrust servicesMichael Boniface0Laura Carmichael1https://orcid.org/0000-0001-9391-1310Wendy Hall2https://orcid.org/0000-0003-4327-7811Brian Pickering3Sophie Stalla-Bourdillon4Steve Taylor5https://orcid.org/0000-0002-9937-1762Electronics & Computer Science, University of Southampton, Southampton, United KingdomElectronics & Computer Science, University of Southampton, Southampton, United KingdomElectronics & Computer Science, University of Southampton, Southampton, United KingdomElectronics & Computer Science, University of Southampton, Southampton, United KingdomLaw, University of Southampton, Southampton, United KingdomElectronics & Computer Science, University of Southampton, Southampton, United KingdomTurning the wealth of health and social data into insights to promote better public health, while enabling more effective personalized 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, involve 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 reidentification risk over time, and the challenge of establishing and maintaining a social license. Datatrust services are a sociotechnical 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. In this article, we explore the requirements for datatrust services, a proposed implementation—the Social Data Foundation, and an illustrative test case. Moving forward, such an approach would help incentivize, 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.https://www.cambridge.org/core/product/identifier/S2632324922000013/type/journal_articledata governance modelsdata institutionsdata stewardshipdatatrust serviceshealthcare and social care |
| spellingShingle | Michael Boniface Laura Carmichael Wendy Hall Brian Pickering Sophie Stalla-Bourdillon Steve Taylor The Social Data Foundation model: Facilitating health and social care transformation through datatrust services Data & Policy data governance models data institutions data stewardship datatrust services healthcare and social care |
| title | The Social Data Foundation model: Facilitating health and social care transformation through datatrust services |
| title_full | The Social Data Foundation model: Facilitating health and social care transformation through datatrust services |
| title_fullStr | The Social Data Foundation model: Facilitating health and social care transformation through datatrust services |
| title_full_unstemmed | The Social Data Foundation model: Facilitating health and social care transformation through datatrust services |
| title_short | The Social Data Foundation model: Facilitating health and social care transformation through datatrust services |
| title_sort | social data foundation model facilitating health and social care transformation through datatrust services |
| topic | data governance models data institutions data stewardship datatrust services healthcare and social care |
| url | https://www.cambridge.org/core/product/identifier/S2632324922000013/type/journal_article |
| work_keys_str_mv | AT michaelboniface thesocialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT lauracarmichael thesocialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT wendyhall thesocialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT brianpickering thesocialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT sophiestallabourdillon thesocialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT stevetaylor thesocialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT michaelboniface socialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT lauracarmichael socialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT wendyhall socialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT brianpickering socialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT sophiestallabourdillon socialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices AT stevetaylor socialdatafoundationmodelfacilitatinghealthandsocialcaretransformationthroughdatatrustservices |