학술논문
Preferences for onward health data use in the electronic age among maternity patients and providers in South Africa: a qualitative study.
Document Type
Academic Journal
Author
LeFevre A; Associate Professor, School of Public Health, University of Cape Town, Falmouth Rd, Observatory, Cape Town 7925, South Africa.; Welte O; Social Scientist, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.; Moopelo K; Social Scientist, Sarraounia Public Health Trust, Johannesburg, South Africa.; Tiffin N; Professor, South African Bioinformatics Institute, Life Sciences Building, University of the Western Cape, Bellville.; Mothoagae G; Associate Researcher, Sarraounia Public Health Trust, Johannesburg, South Africa.; Ncube N; Social Scientist, Sarraounia Public Health Trust, Johannesburg, South Africa.; Gwiji N; School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.; Shogole M; Social Scientist, Sarraounia Public Health Trust, Johannesburg, South Africa.; Slogrove AL; Associate Professor, Faculty of Medicine and Health Sciences, Department of Paediatrics & Child Health, Stellenbosch University, Worcester, South Africa.; Moshani N; Social Scientist, School of Public Health, University of Cape Town, Cape Town, South Africa.; Boulle A; Professor, School of Public Health, University of Cape Town, Cape Town, South Africa.; Goudge J; Professor, Centre for Health Policy, School of Public Health, University of the Witwatersrand, Johannesburg, South Africa.; Griffiths F; Professor, Warwick Medical School, Warwick, UK; Professor, Centre for Health Policy, School of Public Health, University of the Witwatersrand, Johannesburg, South Africa.; Fairlie L; Director of Maternal and Child Health, Wits RHI, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.; Mehta U; Associate Professor, School of Public Health, University of Cape Town, Cape Town, South Africa.; Scott K; Independent research consultant, Toronto, Canada; Associate Faculty, Johns Hopkins School of Public Health, Baltimore, USA.; Pillay N; Director, Sarraounia Public Health Trust, Johannesburg; Visiting Researcher, School of Sociology, University of the Witwatersrand, Johannesburg, South Africa.
Source
Publisher: Taylor & Francis Country of Publication: England NLM ID: 101743493 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2641-0397 (Electronic) Linking ISSN: 26410397 NLM ISO Abbreviation: Sex Reprod Health Matters Subsets: MEDLINE
Subject
Language
English
Abstract
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.