Study Privacy Policy

The University of Hertfordshire is committed to respecting your privacy and treats your personal data in line with current legislation and best practice guidance.

The purpose of this policy is to inform you, in a clear, open, and concise manner, about the data we collect, the reason for collecting it, how it is used, and your rights about the processing of such data. This page contains a simple version of the University of Hertfordshire’s Privacy Policy in the form of questions and answers. You can also read the detailed version which is available on the University of Hertfordshire’s main website.

Who is responsible for your data if you take part in the PEACE-COS study?

Based in the United Kingdom, the University of Hertfordshire is the sponsor for the PEACE-COS study. The study aims to identify what is important in end-of-life care in critical care to develop a core outcome set. To do this we collect and study information about your experience of end-of-life care in critical care.  The University of Hertfordshire will use this information from you in order to undertake this study and will act as the data controller for this study.  This means that the University of Hertfordshire is responsible for looking after your information and using it properly.

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 personally-identifiable information possible.

What information do we collect about you and how do we use it?

We collect information about the person who received end-of-life care in critical care and your experience. This information is provided directly by you.  It will not affect any future healthcare services that you access or care that you receive.

The University of Hertfordshire will keep and use your name and contact details (telephone number, email address, postal address) to contact you about the PEACE-COS study. Individuals at the University of Hertfordshire and regulatory organisations may look at your research data to check the accuracy of the research study. 

We will specify the intended and future use of your information when you enter it into a form. By submitting the form, you agree that your information will be used for the purposes specified. Your name, contact information, and completed information will be saved by the PEACE-COS study team at the University of Hertfordshire.

The PEACE-COS study will not publish information that can enable individual participants to be identified.  The only people at the University of Hertfordshire who will have access to information that identifies you will be people who need to contact you about study follow-up or audit the data collection process.

Legal basis for processing personal data

Your personal information is collected in line with the University of Hertfordshire’s charitable objects. When we use personally identifiable information from people who have agreed to participate in research, we must ensure that it is in the public interest. This is based on the legitimate interest we have in advancing, promoting, and conducting research, as well as disseminating the results of that research.  Under the UK General Data Protection Regulation (UK GDPR) this is called Article 6(1)e and Article 9(2)(a).

How long do we keep your data?

The study has a planned initial duration of two years and the University of Hertfordshire will keep your personal identifiable data from this study for three years after the study has finished. At the end of the three years your personal data will be deleted. We may need to keep personal data for a longer period of time if we need to fulfill any legal, accounting or reporting requirements.

Personal data may also be retained for further research where a legal basis exists.  This will be done in accordance with data protection laws at all times.

Who do we share data with?

If you agree to participate in the PEACE-COS study, the University of Hertfordshire will use your data to conduct and analyse the research study. The research will be conducted in accordance with the UK Policy Framework for Health and Social Care Research. The information collected by PEACE-COS is only used for research after it has been made anonymous and will not be shared with anyone outside the PEACE-COS study team.

How do we protect your data?

The University of Hertfordshire is committed to protecting your data against unauthorised access or disclosure, accidental loss, corruption, or destruction. A range of physical, electronic, and managerial procedures are in place to safeguard and protect your data and the systems that store it. Examples of these include encryption and password protection, identifying participants with unique study numbers rather than names whenever possible, and limiting the number of people who have access to where your data is stored.

We review these security measures on a regular basis and refer to the University of Hertfordshire’s Security Policies to maintain best practices.

Your data protection rights

Under the General Data Protection Regulation (GDPR) you have the following rights in relation to the personal data that we hold about you:

• The right to request access – you have the right to ask us for a copy of your personal data.
• The right to rectification – you have the right to ask us to correct your personal information you think is inaccurate or incomplete.
• The right to erasure – you have the right to ask us to erase your personal information in certain circumstances.
• The right to restrict processing – you have the right to ask us to restrict the processing of your personal data in certain circumstances.
• The right to data portability – you have the right to ask that we transfer the personal data that you have us to another organization, or you, in certain circumstances.

Depending on the circumstances, we may have grounds to refuse your request, for example, if we believe that deleting your information would seriously harm the research or if we need to process your data to perform a task in the public interest.

Please contact the study team at peace-cos@herts.ac.uk if you wish to make a request. 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 personally-identifiable information possible.

Changes to our privacy policy

Any changes to the privacy policy will be displayed on this webpage. Please return regularly to see any updates or changes.

The privacy policy was last updated on 24 August 2022.

Who can you contact about this notice?

You can find out more about how we collect, process, and use your data by contacting the University of Hertfordshire’s Data Protection Officer.

Complaints

If you have any concerns about how we use your personal data you can contact our Data Protection Officer who will investigate the matter.  Please email: dataprotection@herts.ac.uk

If you are not satisfied with the response you can also complain to the Information Commissioner’s Office (ICO). The ICO is the UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.