Wits Donald Gordon Medical Centre Clinical Research

Privacy Notice issued in terms of the Protection of Personal Information Act 4 of 2013

Who we are

The Clinical Research office at Wits Donald Gordon Medical Centre (WDGMC) is an entity tasked with undertaking clinical research to the benefit of the WDGMC community and our patients. We pride ourselves on producing research to the highest ethical, scientific and academic standards. We aspire to publish our research in order to advance the body of knowledge across a number of clinical fields.

Over-and-above our research activity, we undertake annual audits of certain practice units within WDGMC. These form part of quality assurance, internal audit and verification, and are utilised in order to benchmark the services we provide at WDGMC to international standards and best practices.

We are legally and ethically obliged to maintain the confidentiality of your personal information and comply with the Protection of Personal Information Act 4 of 2013 (POPIA) when processing your personal information.

As an entity undertake these functions, we will, from time to time, access the Personal Information of patient who have received treatment at WDGMC. In some cases, patient have provided explicit, written consent to the access. This is either through signing our generic research consent form on admission, or through a research project run in an individual practice, where patients have been invited to participate by a staff member.

In some instances, we access Personal Information from patients who have been treated at WDGMC in the past, but are no longer under treatment with us. We utilise this information for research purposes according to the stipulations in the National Department of Health: "Ethics Guidelines in Health Research: Principles, Structures and Processes" Available form: https://ahrecs.com/resources/ethics-health-research-principles-processes-structures-2nd-ed-south-africa/ and the National Health Act No 61 of 2003.

The purpose of the notice

The purpose of this notice is to inform our research participants and patient at WDGMC about the type and use of personal information we collect from you, the ways in which it is collected, the sharing, protection and storage thereof.

What is personal information?

The term 'personal information, as used in this notice, applies to information that may be used to identify an individual or a juristic person (i.e. for example a registered company).

POPIA defines personal information as "information which relates to an identifiable, living, natural person, and where it is applicable, an identifiable, existing juristic person. The person to whom personal information relates is referred to as the "data subject".

Examples of personal information include, but are not limited to, contact information, financial information, information relating to race, gender, sexual orientation, age, physical or mental health, well-being, disability, religion, conscience, belief, culture, language and birth of the person.

What type of personal information do we collect?

Personal information collected by our projects can include a combination of demographic information (name, age, gender, ethnicity), clinical information (name of condition, treatment received, interventions utilised), laboratory or pathology information (blood test results, histopathology results), diagnostic information (x-rays, scans, imaging studies) and follow-up information (survival, quality of life).

How do we collect personal information?

We will collect personal information:

  • Directly from you
  • From your clinical records or other records

Use of personal information

After obtaining consent, the personal information collected or held by the WDGMC Clinical Research Office may be used, stored, transferred or disclosed or shared for the following purposes:

  • Further processing for other research projects where approval for a research study as approved by a registered Human Research Ethics Committee is in place
  • Statistical analysis for publication or audit purposes
  • Student research, where approval by a registered Human Research Ethics Committee is in place

Sharing of personal information

We will only share your personal information with third parties if you have consented to such disclosure. If consent has been obtained, we may share your personal information with persons or organisations within and outside of the research study. These third parties will be obliged to use that personal information only for the reasons and purposes it was disclosed for.

In the event that patient data is utilised retrospectively, all data will be deidentified.

We may be obliged to disclose your personal information to the extent that it is required to do so by law, in connection with any legal proceedings or prospective legal proceedings.

Securing personal information

We will take all reasonable technical and organisational precautions to prevent the loss, misuse or alteration of your personal information. We will store all the personal information in secured environments, for example on secured servers in a protected data centre.

How you can review and correct your personal information

You can request to review your personal information contained in our research records at any time to correct or update the information. If the purpose for which your personal information was requested initially does not exist anymore, you may request information held by us is removed. We will provide proof of removal in this case. However, we can decline your request to delete the information from our records if other legislation requires the continued retention thereof or if it has been de-identified.

Updating of this processing notice

We may update this notice periodically and an updated version may be requested, for example through an email notification addressed to the contact details provided below.

Managing Data Privacy in our research project

The Clinical Research Office at WDGMC has implemented the following safeguards in order to ensure privacy of personal information:

  • We store personal information on an academic research database called REDCAp. REDCAp is POPIA compliant and the backup server is located in South Africa. REDCAp has extensive layers of data security, so your data will be well-protected.
  • All our staff undergo regular POPIA training
  • We have an established Data Access Committee that reviews all requests for Personal Information that are directed to us from third parties
  • We insist that the third party gets permission to utilise Personal Information from the Wits Human Research Ethics Committee (Medical) before we will transfer it
  • We minimise the amount of data shared with third parties

Research Opt-Out

In exceptional cases, we utilise personal information of patients who are no longer under management at WDGMC for research projects. If you are a past patient, and would prefer us not to utilise your information in this manner, please contact us on the details below, and if we have included you in any research project, we will remove you from it provided your information is still identifiable (if information has been deidentified, we cannot tell what information belongs to whom, and so we cannot trace your information and remove it).

Contact Details

Please send an email to wdgmcresearch@mediclinic.co.za to contact us. The inbox associated with this address is monitored regularly, and we will respond to your request in a timely manner.