CoughWatchSA Privacy Policy Version 2

Wits Health Consortium (Pty) Ltd, with registered office at 31 Princess of Wales Terrace, Parktown, 2193, Johannesburg, South Africa (hereinafter “WHC”), is currently conducting a Sanofi Pasteur funded Study entitled “CoughWatchSA” with a secondary component called “Home Self-Swab Pilot Study”: Community ARI Surveillance to Supplement Sentinel Surveillance for Respiratory Illness in Republic of South Africa (FLU00177)” (“the Study”). WHC in its capacity as Sponsor and Data Controller of the Study brings to your attention, pursuant to The Protection of Personal Information Act 4 of 2013 (“POPIA”, this Privacy Policy).

This Privacy Policy outlines the practices and procedures for the collection, use, disclosure, and protection of personal information in relation to the Study. This Policy applies to all participants, researchers, and any other individuals or entities involved in the Study. Please read this Privacy Policy carefully to understand how personal information will be handled.

1. Purpose of data collection

During the study data will be collected related to the feasibility, logistics and acceptability of participatory surveillance for influenza-like illness (“ILI”) through electronic data forms and surveys on a web application. Symptoms reports on ILI will be collected on a weekly basis to determine suspected reported cases of ILI. Analysis of health-seeking and testing behaviour conducted. SARS-CoV-2, influenza and RSV samples will be collected from participants who are eligible for home-based testing and analysed. Influenza positive samples will be typed and sequenced. As a secondary objective, if vaccine coverage and case and control numbers are sufficient then vaccine effectiveness estimates will be calculated for influenza and SARS-CoV-2 vaccine using a test-negative case-control study design. The information collected will be used for scientific research, academic purposes, and to fulfil any legal or regulatory requirements. 

2. What data is collected and processed during the study? 

The personal data that is collected through the questionnaires and processed in the subsequent analyses are:

  • basic demographic information: your age, gender, postal code, province, employment status, highest education level, healthcare worker and educator status,
  • information on lifestyle factors: smoking status, alcohol consumption, household size and number of rooms used for sleeping, average number of daily contacts, use of public transport, type of health care sought (private or public)
  • information on your current medical underlying conditions; and
  • information about the seasonal influenza and COVID19 vaccines you have undergone.
  • Data on any symptoms reported on a weekly basis, including follow-up questions related to onset date of symptoms, history of fever, any care sought, any tests done for influenza and COVID19, any medication taken, changes in routine due to illness. 

3. How is my data collected 

The Study may collect personal information through various methods, including:

  • Participant questionnaires and forms through CoughWatchSA app
  • Satisfactory surveys and participant feedback
  • Laboratory tests and samples 

4. How will my personal data be processed? 

Your contact information (email address and username you signed up with) will be stored separately from your responses to the questionnaires. Your replies will be associated with a unique identifier that cannot be traced back to your contact details (through a pseudonymisation process). Only WHC and Fondazione Instituto per l’Interscambio Scientifico – I.S.I (the entity administering the CoughWatchSA Platform) will have access to your identifiable information, and only for purposes of the Study. The answers to the questionnaires and your unique identifier (without any identifiable information) will be shared with study collaborators and the study team, who will analyse your data with the prior authorisation of WHC. The information to decipher your unique code will never leave the platform. Your identity and any information which will be able to identify you, will therefore not be available to any researcher and will never appear in a scientific publication or presentation. 

5. What will happen to the information collected about me during the study? 

WHC can appoint authorised persons (researchers) to analyse the data collected on the CoughWatchSA Platform. Those authorised to process will only have access to the pseudonymised data (i.e. your answers and study identifier) as described above. Authorised persons may use pseudonymised personal data solely for research purposes. If a researcher wishes to use the data for research not yet described in this document, such research must be approved by an Ethics Committee. WHC may grant external researchers (who are not involved in this study) access to the pseudonymised data for purposes of the Study. All data collected under the Study will be processed in accordance with POPIA and subject to your written informed consent. 

6. What are my rights with respect to my data? 

You have the right to ask WHC what data has been collected and what it is used for in this study. You have the right to:

  • access and control this data
  • delete your data
  • request the correction of data if they are incorrect
  • limit the processing of your data
  • object to the processing of your personal data
  • revoke consent to the processing of personal data. Your personal data that has already been collected before the withdrawal of consent will be retained to prevent any misinterpretation of the study results
  • propose a complaint to the Ethics Committee, the Information Regulator and / or the Deputy Information Officer of WHC. You can exercise your rights by writing to the CoughWatchSA study team at the following email address coughwatchsa@nicd.ac.za .

If you have questions about how your personal information is protected you may contact Adél Venter, the Deputy Information Officer of Wits Health Consortium (Pty) Ltd on popia@witshealth.co.za or Information Regulator – POPIAComplaints@inforegulator.org.za / enquiries@infroregulator.org.za . 

7. What will be the use of the results of the study?

The interim results of the study are published regularly on our website in the form of anonymous statistics. Furthermore, the results of the statistical analyses may be published in specialised medical journals in the form of aggregated and anonymous data. References to any scientific publications will be published on the Influweb.org website and made available to study participants. 

8. Will my data be used for any purpose other than the study I am participating in? 

The study results will only be used to answer the scientific questions in this study. Any additional or future research outside the study must always be approved by a recognised Ethics Committee in South Africa. 

9. How long will my data be kept? 

After the study, your responses to the questionnaires will be kept for the maximum period permitted by law. This will also be the case if you withdraw from the study before its completion. 

10. Changes to this Privacy Policy 

WHC reserves the right to update or modify this Privacy Policy as necessary to reflect changes in research practices or applicable laws and regulations. Changes may be communicated to participants, but will in any event be posted on the Study’s website.

By participating in the Study, you acknowledge that you have read and understood this Privacy Policy and consent to the collection, use, and disclosure of your personal information as described herein.