Data Protection Policy for Research Participants

1. Overview

1.1 Centre for Substance Use Research, (CSUR), takes the security and privacy of your data very seriously. We need to gather and use information or ‘data’ about you as part of our business and to manage our relationship with you. Research conducted by CSUR complies with our legal obligations under the Data Protection Act 2018 (the ‘2018 Act’) and the EU General Data Protection Regulation (‘GDPR’) in respect of data privacy and security. We have a duty to notify you of the information contained in this policy.

1.2 This policy applies to current and former research participants, and you are referred to as a ‘data subject’ for the purposes of this policy.

1.3 CSUR has measures in place to protect the security of your data in accordance with our Data Security Policy. A copy of this can be obtained from the Data Protection Officer, Dr Farhana Haseen, (Email: [email protected]).

1.4 CSUR will hold data in accordance with our Data Retention Policy. A copy of this can be obtained from the Administrator. We will only hold data for as long as necessary for the research purposes which we collected it.

1.5 CSUR is a ‘data controller’ for the purposes of your personal data. This means that we determine the purpose and means of the processing of your personal data.

1.6 This policy explains how CSUR will hold and process your information. It explains your rights as a data subject.

1.7 It is intended that this policy is fully compliant with the 2018 Act and the GDPR. If any conflict arises between those laws and this policy, CSUR intends to comply with the 2018 Act and the GDPR.

2. Data Protection Principles

2.1 Personal data must be processed in accordance with six ‘Data Protection Principles.’ It must:

• • be processed fairly, lawfully and transparently;
  • be collected and processed only for specified, explicit and legitimate purposes;
  • be adequate, relevant and limited to what is necessary for the purposes for which it is processed;
  • be accurate and kept up to date. Any inaccurate data must be deleted or rectified without delay;
  • not be kept for longer than is necessary for the purposes for which it is processed; and
  • be processed securely.

We are accountable for these principles and must be able to show that we are compliant.

3. How we define personal data

3.1 ‘Personal data’ means information which relates to a living person who can be identified from that data (a ‘data subject’) on its own, or when taken together with other information which is likely to come into our possession. It includes any expression of opinion about the person and an indication of the intentions of us or others, in respect of that person. It does not include anonymised data.

3.2 This policy applies to all personally identifying information whether it is stored electronically, on paper or on other materials.

3.3 This personal data will be voluntarily provided to us by you. These data could also be provided or created during the recruitment process or during the course of the research.

3.4 We may collect and use the following types of personally identifying information about you:

• • your name, email address, contact telephone number;
  • your identification documents for example, passport and driving licence; or any other government issued document confirming your identification;

3.5 Special categories of personal data are types of personal data consisting of information as to:

• • your racial or ethnic origin;
  • your health
  • we may hold and use any of these special categories of your personal data in accordance with the law.

We will retain and use any, or all, of your personal data during the course of the research, only.

4. How we define processing

4.1 ‘Processing’ means any operation which is performed on personal data during the course of the research, only, such as:

• • collection, recording, organisation, structuring or storage;
  • retrieval, consultation or use;
  • disclosure by transmission, dissemination or otherwise making available;
  • alignment or combination; and
  • restriction, destruction or erasure.

This includes processing personal data which forms part of a filing system and any automated processing.

5. How will we process your personal data?

5.1 CSUR will process your personal data (including special categories of personal data) in accordance with our obligations under GDPR and the 2018 Data Protection Act.

5.2 We will use your personal data for:

• • performing research for the specific time period as confirmed to you;
  • complying with any legal obligation in respect of using your personal data;

We will process your personal data for research purposes only with your knowledge and given consent. We will not use your personal data for any unrelated purpose.

6. Sharing your personal data

6.1 We do not share or transfer your personal data with/to any other companies, contractors or agents. However, in certain circumstances and/or studies, having gained ethical approval and participant/parental consent, personal information may be shared with agreed, and authorised third parties.

6.2 We do not send your personal data outside the European Economic Area.

6.3 All CSUR staff are responsible for ensuring that your personal data is collected, stored, processed and handled appropriately in line with this policy and CSUR’s Data Security and Data Retention policies. A written copy of the process is available on request.

6.4 CSUR’s Data Protection Officer Dr Farhana Haseen is responsible for reviewing this policy and updating the Board of Directors on CSUR’s data protection responsibilities and any risks in relation to the processing of all data.

6.5 The data will only be used for the specified lawful purpose for which it was obtained. Your personal data will only be accessed for the purposes, and time period, of the research.

6.6 Your personal data will not be shared informally.

6.7 Your personal data will be kept securely both electronically and in paper format. Only CSUR researchers will have access to your personal data. All personal data in paper format is stored in a locked filing cabinet with only limited authorised staff able to access it. (Authorised individuals are: both Directors of CSUR; Deputy Director).

6.8 Your personal data will be kept securely both electronically and in paper format. Only CSUR researchers will have access to your personal data.

6.9 Your personal data will be anonymised so that you, the data subject, cannot be identified.

6.10 Your personal data will be shredded and disposed of securely in line with our Data Retention Policy.

7. Data breaches

7.1 We have robust measures in place to minimise and prevent data breaches from taking place. Should a breach of personal data occur (whether in respect of you or someone else) then we must take notes and keep evidence of that breach. If the breach is likely to result in a risk to the rights and freedoms of individuals then we must also notify the Information Commissioner’s Office, Email: [email protected] within 72 hours.

8. Subject access requests

 8.1 Data subjects can make a ‘subject access request’ (‘SAR’) to find out the information we hold about them. This request must be made in writing to the Data Protection Officer/Data Protection Manager who will coordinate a response.

8.2 If you would like to make a SAR in relation to your own personal data you should make this in writing to Dr Farhana Haseen, [email protected]. We must respond within one month unless the request is complex or numerous in which case the period in which we must respond can be extended by a further two months.

8.3 There is no fee for making a SAR. However, if your request is manifestly unfounded or excessive we may charge a reasonable administrative fee or refuse to respond to your request.

9. Your data subject rights

9.1 You have the right to information about what personal data we process, how and on what basis as set out during the research recruitment process.

9.2 You have the right to access your own personal data by way of a subject access request. The Data Protection Officer, Dr Farhana Haseen should be contacted in the first instance, Email: [email protected].

9.3 You have the right to be notified of a data security breach concerning your personal data.

9.4 We will rely on your consent at the research recruitment stage as a lawful ground to process your data. To withdraw from the research, at any stage, and hence your consent you should contact the Study Investigators.

9.5 You have the right to complain to the Information Commissioner. You can do this be contacting the Information Commissioner’s Office directly. Full contact details including a helpline number can be found on the Information Commissioner’s Office website ([email protected]). The ICO website has further information on your rights and our obligations.