Abstract
The Protection of Personal Information Act (POPIA) 2013 came into force in South Africa on 1 July 2020. It seeks to strengthen the processing of personal information, including health information. While POPIA is to be welcomed, there are concerns about the impact it will have on the processing of health information. To ensure that the National Health Laboratory Service [NHLS] is compliant with these new strict processing requirements and that compliance does not negatively impact upon its current screening, treatment, surveillance and research mandate, it was decided to consider the development of a NHLS POPIA Code of Conduct for Personal Health. As part of the process of developing such a Code and better understand the challenges faced in the processing of personal health information in South Africa, 19 semi-structured interviews with stakeholders were conducted between June and September 2020. Overall, respondents welcomed the introduction of POPIA. However, they felt that there are tensions between the strengthening of data protection and the use of personal information for individual patient care, treatment programmes, and research. Respondents reported a need to rethink the management of personal health information in South Africa and identified 5 issues needing to be addressed at a national and an institutional level: an understanding of the importance of personal information; an understanding of POPIA and data protection; improve data quality; improve transparency in data use; and improve accountability in data use. The application of POPIA to the processing of personal health information is challenging, complex, and likely costly. However, personal health information must be appropriately managed to ensure the privacy of the data subject is protected, but equally that it is used as a resource in the individual’s and wider public interest.
Highlights
Vast quantities of healthcare data are being collected and processed to predict outbreaks, respond to epidemics, improve service delivery in health care systems, and cut costs
It is hoped that genomics can be integrated into public health which relies on access to data, good clinical practice requires the sharing of data, and access to data is important to assess programmatic interventions [3, 4]
“We have really struggled with compliance. . .and matters have profoundly come to a head in part because of Protection of Personal Information Act (POPIA). . . highly sensitive named patient data is not exclusively contingent on POPIA, there’s a gaggle of legislation, regulations that demand this emanates from the National Health Act” [Government dept, 03, National Health Laboratory Service (NHLS) Affiliated]
Summary
Vast quantities of healthcare data are being collected and processed to predict outbreaks, respond to epidemics, improve service delivery in health care systems, and cut costs. It is hoped that genomics can be integrated into public health which relies on access to data, good clinical practice requires the sharing of data, and access to data is important to assess programmatic interventions [3, 4]. In parallel with this push towards data sharing, there has been a strengthening of data protection regulations in many countries across the world, that seeks to promote the free movement of data while protecting the rights of data subjects. The challenge is how to govern the use of health data (i.e. data that relates to the health of an individual) so that it is made available for individual patient care, national health treatment programmes, and for research, but in a manner that safeguards the privacy of data subjects [5]
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