3C Study Privacy Notice

We are committed to protecting the privacy and security of your personal information. This notice describes how we collect and use your personal data in accordance with the UK General Data Protection Regulation (UK GDPR) and associated data protection legislation.

The name and contact details of our organisation

The University of Oxford is the “data controller" for the information that you provide to us. This means that we decide how to use it and are responsible for looking after it in accordance with the UK GDPR. The University of Oxford central office address is:

Wellington Square, Oxford, OX1 2JD.

The 3C Study is coordinated by the Clinical Trial Service Unit, whose address is:

CTSU, Richard Doll Building, Old Road Campus, Headington, Oxford OX3 7LF.

The contact details of our data protection officer

The University’s Data Protection Officer can be contacted at:

            data.protection@admin.ox.ac.uk.

The purposes of the processing

Your data are being collected and analysed (“processed”) in order to investigate the effects of different treatment strategies on outcomes after kidney transplantation. As part of this work, we may use your data to conduct methodological trial research, for example to compare different methods of follow-up and the information they provide. We may also use the data to assess the importance of other factors on outcomes after kidney transplantation. We may share your de-identified data (i.e. a version of the data from which any information which could identify you has been removed) with other scientists if they wish to use it for research which the trial’s principal investigators approve of. We may also combine your data with that from other similar trials to understand all of the available data.

Your data will not be used as part of any automated decision-making, including profiling.

The lawful basis for the processing

Our lawful basis for processing your personal data (including special category data) is that the processing is necessary to perform a task in the public interest and the task has a clear basis in law – UK GDPR Article 6(1)(e). Special category data is processed for the purposes of research – UK GDPR Article 9(2)(j).

The categories of personal data obtained (if the personal data is not obtained from the individual it relates to)

We are collecting personal data including health information such as:

• your name and contact details
• information on your health at the time of your kidney transplant
• medication use since your transplant
• any admissions to hospital or other serious illnesses that have occurred since your transplant
• laboratory results which help us calculate how well your transplant is working, and whether you have started dialysis or had a subsequent kidney transplant

The recipients or categories of recipients of the personal data

These data have been collected at CTSU and are stored securely (both physically and electronically). We may share your data with other scientists if the trial’s principal investigators approve of their research plan. In this case, your data would be “de-identified” (which means that any information which could identify you has been removed).

We will only use your data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another related reason and that reason is compatible with the original purpose. If we need to use your data for an unrelated purpose, we will seek your consent to use it for that new purpose. Please note that we may process your data without your knowledge or consent, in compliance with the above rules, where this is required or permitted by law.

We may share your data with third parties (e.g. regulators or law enforcement agencies) if we are under a duty to disclose or share your personal data in order to comply with any legal obligation, or to protect the rights, property or safety of our site, our users, and others. Any such third-party would be required to take appropriate security measures to protect your data in line with our policies. We permit them to process your data only for specified purposes. Where your data is shared with third parties, we will seek to share the minimum amount necessary.

 

The details of transfers of the personal data to any third countries or international organisations

There may be occasions when we transfer your data outside the European Economic Area (EEA). Such transfers will only take place if one of the following applies:

• the country receiving the data is considered by the EU to provide an adequate level of data protection;
• the organisation receiving the data is covered by an arrangement recognised by the EU as providing an adequate standard of data protection e.g. transfers to companies that are certified under the EU US Privacy Shield;
• the transfer is governed by approved contractual clauses;
• the transfer has your consent;
• the transfer is necessary for the performance of a contract with you or to take steps requested by you prior to entering into that contract; or
• the transfer is necessary for the performance of a contract with another person, which is in your interests.

For a copy of the safeguards which are put in place for data transfers outside of the EEA, please contact the 3C coordinating centre by emailing cccstudy@ndph.ox.ac.uk.

The retention periods for the personal data

Any data included in the study database, including your personal data, will be retained for 25 years after the end of the trial in accordance with clinical trials regulations. After this time, your personal data will either be deleted or rendered anonymous (non-identifiable).

We may need to retain personal data for longer if it is necessary to fulfil our purposes, including any relating to legal, accounting, or reporting requirements. We may also retain personal data for further research for which a legal basis exists. This will always be done in accordance with data protection laws.

General information about how long different types of information are retained by the University can be found in the University’s Policy on the Management of Research Data and Records, available via http://researchdata.ox.ac.uk/university-of-oxford-policy-on-the-management-of-data-supporting-research-outputs/.

Your data protection rights

Under the General Data Protection Regulation (UK GDPR), you have the following rights in relation to the information that we hold about you (your ‘personal data’).

• The right to request access to your data (commonly known as a "subject access request"). This enables you to receive a copy of your data and to check that we are lawfully processing it.
• The right to request correction of your data.  This enables you to ask us to correct any incomplete or inaccurate information we hold about you.
• The right to request erasure of your data.  This enables you to ask us to delete or remove your data in certain circumstances for example, if you consider that there is no good reason for us continuing to process it. You also have the right to ask us to delete or remove your data where you have exercised your right to object to processing (see below).
• The right to object to the processing of your data. This enables you to object to us processing your data where we are processing it to meet our public tasks or legitimate interests (or the legitimate interests of a third party). You also have the right to object where we are processing your data for direct marketing purposes.
• The right to request that the processing of your data is restricted.  This enables you to ask us to suspend the processing of your data, for example, if you want us to establish its accuracy or the reason for processing it.
• Request the transfer of your data to another party.

Further information on these rights is available from the Information Commissioner’s Office.

Depending on the circumstances and the nature of your request it may not be possible for us to do what you have asked, for example, where there is a statutory or contractual requirement for us to process your data and it would not be possible to fulfil our legal obligations if we were to stop. However, you can withdraw from the study at any time by emailing cccstudy@ndph.ox.ac.uk.

If you want to exercise any of the rights described above or are dissatisfied with the way we have used your information, you should contact the University’s Information Compliance Team. We will seek to deal with your request without undue delay, and in any event in accordance with the requirements of the UK GDPR. Please note that we may keep a record of your communications to help us resolve any issues which you raise.

You also have the right to lodge a complaint with a supervisory authority. In the UK, this is the Information Commissioner’s Office (ICO). A complaint to the ICO can be made by visiting their website https://ico.org.uk/make-a-complaint/ or by calling their helpline on 0303 123 1113.

The source of the personal data

In addition to the data we have received from directly (either through interviews during study clinic visits, on questionnaires or by telephone) we will collect data from central registries which routinely collect data for the NHS. These include:

• NHS Digital (which collects information on admissions to hospital, diagnoses of cancer and causes of death) and its equivalents in Wales (NHS Wales Informatics Service) and Scotland (NHS Central Register and Public Health Scotland)
• UK Renal Registry (which collects on information on how well kidney transplants are functioning)
• UK Transplant Registry (which collects information on transplant outcomes such as rejection and function)