Overview

The data controller for the DETERMIND study is the University of Sussex. In this notice, ‘we’, ‘us’ and ‘our’ refers to the University of Sussex. The University of Sussex is registered as a data controller with the Information Commissioner’s Office (ICO). The registration reference is Z6428144. This privacy notice clarifies how we process personal data for the DETERMIND study and about your rights. A privacy notice covering the University of Sussex as a whole (across all of its activities and functions) can be found here.

You can refer to the University’s Data Protection Policy for more information about our commitment to processing personal data in a way that is compliant with relevant data protection legislation, including the General Data Protection Regulation and the Data Protection Act 2018.

The Data Protection Officer for the University of Sussex is Alexandra Elliott, Head of Information Management and Compliance. If you have any queries concerning your personal data and how it is processed, including for the DETERMIND study, contact the Data Protection Officer at dpo@sussex.ac.uk.

Taking part in the DETERMIND study

It is up to you to decide if you would like to take part in the research. If you do decide to take part, you will be an information sheet to keep and be asked to sign a consent form. If you do decide to take part, you are free to withdraw at any time (without having to give a reason).

If you no longer wish to take part in the research, then please contact a member of the research team. All data collected during the study will be kept for analysis and publication purposes unless otherwise requested.

Not taking part or later withdrawing from the study will have no effect on your usual care and treatment. Individuals are under no statutory or contractual obligation to provide their personal data.

As part of the research, you will be asked to answer several questionnaires. These will be related to your memory, health and well-being. Should you wish, you can choose to have someone with you during the visit.

If you are happy for us to do so, we will also be asking an ‘informant’ (usually a family member or friend that has some insight into your day-to-day life) some questions to supplement the answers you provide. You can still take part in the study without this informant. Each visit will last approximately 2 hours. We ask to come and visit you again once a year for the next 3 years to ask similar questions.

We will also ask your permission to do the following. These are all optional and do not affect your participation in the overall research study.

1. Update your medical records about your participation in this research.

2. Contact you about future dementia research projects.

3. Link your data with civil registration data held by NHS Digital. NHS Digital is a non-departmental public body that reports to the Department of Health and Social Care. It manages a range of health and social care data for all the people in the country. With your consent, a flag will be put next to your name so that, in the case of a registered death, authorised researchers will be notified. The information will be treated confidentially and used for research purposes only. By giving consent you are only giving permission for the linking of civil registration (death registration) records and nothing else. We will not be able to obtain any other details about you from NHS Digital or the Department of Health and Social Care.

Please ask the interviewer about anything that concerns you or you can speak to Dr Ben Hicks (Study co-ordinator) on 01273 877843.

The basis for processing your personal data

In the DETERMIND study, we collect and process personal information for the purpose of research. Personal data may include “special categories of data” as described under the General Data Protection Regulation, such as information about your racial or ethnic origin, religious beliefs or other beliefs, and physical or mental health.

When we process personal data, there needs to be a legal basis for doing so and, if we process special categories of data, we need to meet additional conditions too. Further information can be found on the ICO’s website. The DETERMIND study processes personal data on the basis that it is necessary for the performance of our tasks carried out in the public interest, under General Data Protection Regulation, articles 6(1)(e) and 9(2)(j). The purpose of the University is to advance learning and knowledge, including through research such as that undertaken by the DETERMIND study, to the benefit of the wider community. The aim of the DETERMIND study is to understand the inequalities in dementia care and what things contribute to good and bad experiences and costs for people following a diagnosis.

We may also need to process personal data to comply with our legal obligations. This can include compliance and regulatory obligations, such as anti-money laundering laws, immigration obligations and safeguarding requirements, or to assist with investigations carried out by the police or other authorities. We may also process your personal data where it is necessary to protect your or another person’s vital interests, or in circumstances where we have your specific consent to do so.

How we use personal data in the DETERMIND study

Throughout the course of research carried out at the University (as part of its purpose to advance learning and knowledge by teaching and research to the benefit of the wider community), personal data will be processed where necessary. Further information can be found below and within our Research policies.

Research participants

Where individual research involves human participants (data subjects), the research is subject to an ethical review process. The DETERMIND study has ethical approval from London-Brighton and Sussex Research Ethics Committee (HRA and Health and Care Research Wales Approval Reference: 19/LO/0528). Research participants in the DETERMIND study will also be provided with an information sheet about the DETERMIND study, as well as the necessary consent form(s), to ensure transparency and clarity regarding data collection, use, and retention. The University has created consent forms in a standard agreed format. There will be no transfers of the personal data to any third countries or international organisations. No automated decision-making or profiling will be undertaken.

Health research

As a University we use personal data to conduct research to improve health, care and services, and we have to ensure that it is in the public interest when we use personal data from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum amount of personal data possible. Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

Confidentiality

When processing and storing information, we will comply with the General Data Protection Regulation and the Data Protection Act 2018 to protect your confidentiality. During the study, your information will be labelled or ‘coded’ with a participant number, not your name. Once we have collected all the results for this study, the findings will be published in scientific reports and presentations. You will not be identified in any publication or presentation.

The University will only keep your personal data for as long as is necessary for the purpose for which it is processed. Personal data is processed and stored in line with the University’s Master Records Retention Schedule, which sets out how long different categories of personal data should be held by the University.

Following the end of the study, anonymised data from the DETERMIND study will be deposited on an online repository (UK Data Service) to allow access from other authorised researchers to run their own data analysis. All anonymised data will be stored securely for up to 10 years after the end of the study (the study is due to end in December 2023). Identifiable information about you will be stored for 6-12 months after the study has finished.

Anonymised data from the study will also be provided, on request, to researchers undertaking authorised linked studies, which have been approved by a Research Ethics Committee.

Everything you say/report is confidential unless you tell us something that indicates you (or someone else) are at risk of harm. We would discuss this with you before telling anyone else.