Privacy Notice

Study title: Research offering Seizure First Aid Training to people with epilepsy and their family and friends: A pilot trial

1. Introduction

You are being asked to take part in a research study. If you consent to take part the research team will need to collect personal information (data) from each participant. This Privacy Notice explains how a person's data is protected with regard to processing personal data, what this will involve, and an individual's rights in relation to personal data.

2. Who is the Data Controller?

The University of Liverpool is the Data Controller and is responsible for processing personal data of participants in research projects. To do this, the University of Liverpool works within the Data Protection Principles set out in the General Data Protection Regulation (GDPR) to ensure that a person's data is collected and used fairly, stored safely and not shared with any other person unlawfully. Further information can be found in the University's Data Protection Policy

3. Who is the Data Protection Officer?

The University of Liverpool's designated Data Protection Officer is Victoria Heath. Questions about the privacy notice or any complaints about how personal data is used can be lodged with the University's Data Protection Officer:

Victoria Heath
The University of Liverpool, The Foundation Building, 765 Brownlow Hill
Liverpool L69 7ZX
Telephone: 0151 794 2148

A complaint can also be lodged with the Information Commissioner's Office

4. How is data processed and kept confidential?

Following consent to participate in this study 'personal data' will be collected from you. Personal data is any information relating to an identifiable person who can be identified, directly or indirectly, by reference to an 'identifier'. An identifier could be a name, an identification number, location data, an online identifier or one or more factors related to health or socio-economic identity of that person.

In this study data about the patient's epilepsy, use of emergency department services, knowledge of and confidence in seizure management and about general well-being will be collected.

In the first instance this data is linked to the individual's name, address and NHS number and is identifiable. Only the studies Chief Investigator (Dr Adam Noble) and the Research Fellow (Dr Dee Snape) will have access to your identifiable data.

Patient participants will then randomly be assigned to one of two groups. From then an individual's data will be linked to a study number. This study number is used to separate a person’s data from their direct identifiers. This process is called 'pseudonymisation' and will reduce the risk of an individual being identified during data processing. Data processing involves transferring pseudonymised data from the completed questionnaires into an electronic database. This process is done by a designated member of staff in the Clinical Trials Unit at the University of Liverpool. This person does not have access to an individual's name, address or NHS number.

With the explicit permission of the people with epilepsy taking part in the study, the research team will share their NHS number with the Health and Social Care Information Centre. This is so the research team can find out, for the purposes of this study, information about how often they visited hospital emergency departments before and after their involvement in this study. This information is already stored by the Health and Social Care Information Centre. The lawful basis under which the research team shall apply to process this data is Article 6(1)(e) – namely, “processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller”.

Again, with the patient's permission, the research team would want to tell their GP/ hospital specialist about their taking part in this study. The research team would also need to speak with a patient and possibly access their medical records if the health professional giving the course or the Research Fellow was worried about their well-being. However, we would talk to individuals about this first.

All research data is held at the University of Liverpool and will be stored on password protected computers. Precautions are taken to ensure any personal data held is kept securely, remains confidential and is not shared with any unauthorised third party. Further information about how the security of an individual's data is ensured can be found in the University's Data Protection Policy here

Anything that the research team publish or pass on will have the individual's name, address and any personal information removed so that they cannot be identified.

5. How long will a person's data be stored?

The University provides general information related to records management. For this particular study, patients who are put into Group A you will be in the study for about one year. Patients in Group B will typically be involved with the study for about 18 months. However once data collection has finished, information from individuals will still need to be kept and stored.

In line with the university's policy and the funder's recommendations data will be archived at the University of Liverpool for at least 10 years, longer if judged to be of historical significance. After this period all data will be destroyed. During this timeframe the research team will analyse the study data, write reports, write papers for publication in scientific journals and present study findings at relevant lay and professional conferences. Individuals will not be identified in any publication. A copy of the published results can be obtained by contacting the study team.

6. What are an individual's rights in relation to personal information?

The accuracy of the information held about individuals is important to us. Individuals have a number of rights under the Data Protection Laws in relation to the way personal data is processed. These include the right:

  • To access their data
  • To have their data rectified if it is inaccurate or incomplete
  • In certain circumstances, to have their data deleted or removed
  • In certain circumstances, to restrict the processing of their data
  • Of data portability, this means they have the right to obtain and reuse their data for their own purposes across different services
  • To object to direct marketing (although the University of Liverpool does not carry out direct marketing)
  • Not to be subject to automated decision making (including profiling), where it produces a legal effect or a similarly significant effect on you (although the University of Liverpool does not use automated decision making)
  • To claim compensation for damages caused by a breach of the Data Protection Laws.

It is a person's right, even if they decide to take part in this study, to change their mind at any time, without the need to give a reason. If an individual wishes to withdraw from the study they should contact the Research Fellow (Dr Dee Snape),to discuss what they would like to happen with their data. For example, an individual may not wish to complete any more questionnaires:

  • But are happy for the research team to keep and analyse any information that had already been collected; or
  • They may choose to have all their data previously collected deleted or removed.

Further information about an individual's rights in relation to personal data is available from the University of Liverpool's website:

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