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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
Preferences for onward health data use in the electronic age among maternity patients and providers in South Africa: a qualitative study
Sexual and Reproductive Health Matters, Volume 31, No. 4, Article 2274667, Year 2023
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Description
Despite the expanding digitisation of individual health data, informed consent for the collection and use of health data is seldom explicitly sought in public sector clinics in South Africa. This study aims to identify perceptions of informed consent practices for health data capture, access, and use in Gauteng and the Western Cape provinces of South Africa. Data collection from September to December 2021 included in-depth interviews with healthcare providers (n = 12) and women (n = 62) attending maternity services. Study findings suggest that most patients were not aware that their data were being used for purposes beyond the individualised provision of medical care. Understanding the concept of anonymised use of electronic health data was at times challenging for patients who understood their data in the limited context of paper-based folders and booklets. When asked about preferences for electronic data, patients overwhelmingly were in favour of digitisation. They viewed electronic access to their health data as facilitating rapid and continuous access to health information. Patients were additionally asked about preferences, including delivery of health information, onward health data use, and recontacting. Understanding of these use cases varied and was often challenging to convey to participants who understood their health data in the context of information inputted into their paper folders. Future systems need to be established to collect informed consent for onward health data use. In light of perceived ties to the care received, these systems need to ensure that patient preferences do not impede the content nor quality of care received. © 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Authors & Co-Authors
LeFevre, Amnesty E.
South Africa, Cape Town
University of Cape Town
Tiffin, Nicki T.
South Africa, Bellville
University of the Western Cape
Mothoagae, Gaolatlhe
South Africa, Johannesburg
Sarraounia Public Health Trust
Ncube, Nobukhosi
South Africa, Johannesburg
Sarraounia Public Health Trust
Slogrove, Amy L.
South Africa, Stellenbosch
Stellenbosch University
Boulle, Andrew
South Africa, Cape Town
University of Cape Town
Goudge, Jane
South Africa, Johannesburg
Centre for Health Policy, Johannesburg
Griffiths, Frances E.
South Africa, Johannesburg
Centre for Health Policy, Johannesburg
United Kingdom, Coventry
Warwick Medical School
Fairlie, Lee
South Africa, Johannesburg
University of the Witwatersrand
Mehta, Ushma C.
South Africa, Cape Town
University of Cape Town
Scott, Kerry
United States, Baltimore
Johns Hopkins Bloomberg School of Public Health
Pillay, Nirvana S.
South Africa, Johannesburg
Sarraounia Public Health Trust
South Africa, Johannesburg
University of the Witwatersrand
Statistics
Authors: 12
Affiliations: 8
Identifiers
Doi:
10.1080/26410397.2023.2274667
ISSN:
26410397
Research Areas
Health System And Policy
Maternal And Child Health
Study Design
Grounded Theory
Study Approach
Qualitative
Study Locations
South Africa
Participants Gender
Female