Inclusive Research Environment Achieved through Culture Change (I-REACCH) privacy notice for research participants

Principal Investigator

• Professor Nishan Canagarajah

Joint lead co-investigators

• Professor Kate Williams
• Professor John Schwabe

Co-investigators

• Dr Alex Goddard
• Professor Elizabeth Hurren
• Dr Anvesha Singh
• Dr Genovefa Kefalidou

This privacy notice provides information about how the University of Leicester collects and uses your personal information when you take part in this research project and its five workstreams.

Please also refer to the specific Participant Information Sheet for each workstream given to you for further details about the research project, what information will be collected about you, and how it will be used.

The University of Leicester will usually be the Data Controller of any data that you supply for this research. This means that we are responsible for looking after your information and using it properly. Consequently, the University will make the decisions on how your data is used and for what reasons. The exception to this is joint research projects, if this is applicable you will be informed on the Participant Information Sheet as to the other partner institution(s) who will also have responsibilities for looking after your information. You can access more information on this via the University’s Information Assurance Services:

• Information Assurance Services, University of Leicester, University Road, Leicester, LE1 7RH
• +44 (0)116 229 7945
• ias@le.ac.uk
• IAS website

Why do we need your data?

We are collecting your data to learn more about the research culture at the University of Leicester and to evaluate the interventions we are piloting.

University of Leicester’s legal basis for collecting this data is: Processing is necessary for the performance of a task in the public interest such as research.

If the University asks you for sensitive data such as; your racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, data concerning health or sexual life, genetic/biometric data or criminal records, the University of Leicester will use these data because: Processing is necessary for scientific or research in the public interest.

What type of data will the University of Leicester use?

The type of data we will be using varies between the I-REACCH workstreams and the methods of data collection:

• For interviews, focus groups, and lab-based studies we will use audio (for in-person events/meetings) or audio-visual (for Teams events/meetings, although only the audio data will be retained) data. For controlled lab-based studies, automated logging may be employed that will capture human behaviour when interacting with prototype interventions (human behaviour will be tracked either through prototype screen tracking and/or through log files). We will keep a Data Deletion Register to ensure we only keep necessary data for a stated timeframe of the project. The Participant Information Sheet states this transparently and you will be asked to opt-in on a Consent Form.
• For observations, we will take notes, either on paper (which will be transferred to electronic storage as soon as possible after the event/meeting) or electronically. These will always be kept in a confidential and secure locked cabinet at the University of Leicester, and when digitalised retained only on the University of Leicester shared R:\drive.
• For surveys, we will use either written (on a paper survey) or electronic (via an online survey tool) data.
• We may also use notes from conversations and meetings.
• For analysis of records, we will use anonymised and pseudo-anonymised data from, for example, SAP, SITS, and MyPGR. During the course of our research, further databases may be identified and we will always inform you of these.
• All our Special Category data collection will have been approved by Information Assurance Services at the University of Leicester to comply with GDPR (2018).

Who will the University of Leicester share your data with?

Some of the data we will collect will be shared electronically with our research partner, ‘Research Consulting’, for further analysis and audit purposes. Our contract with this organisation includes a Data Sharing Agreement. These data will be either fully or pseudo-anonymised, and will most likely be aggregated – it will not be possible to identify you from these data. We will share the general results with the Wellcome Trust, our funder.

Will the University of Leicester transfer my data outside of the UK?

We will not be sharing identifiable data outside of the UK.

What rights do I have regarding my data held by the University of Leicester?

Your normal rights under the Data Protection Act and the General Data Protection Regulation apply. You can stop being part of the research project at any time, without giving a reason, but we may keep anonymised and de-identified information about you that we already have and continue to use this for the purposes of the research project – this will only happen if we have already used it as part of our analysis. If we have not used it in this way, we will delete your data.

Where did the University of Leicester source my data from?

We will collect data directly from you – through survey responses, interviews, focus groups, emails, observations, and any other source of feedback you wish to share with us. We will also source data from our internal databases such as SAP, SITS and MyPGR. You will be asked to Consent to this under GDPR (2018) in the normal opt-in legal way.

Are there any consequences of not providing the requested data?

There are no consequences of not providing data for this research. It is purely voluntary.

Will there be any automated decision making using my data?

There will be no use of automated decision making in scope of UK Data Protection and Privacy legislation.

How long will the University of Leicester keep my data?

In line with the law, we will only keep your data for as long as we need to so that we can fulfil our research objectives. The team will keep a Data Deletion Register to keep legal track of this.

We will keep your personal data, such as your name and email address until we have completed all the actions that require us to hold them, for example sending you a copy of the results of the study if you have requested this, and then the data will be destroyed. This will take no longer than 6 months from when the study ends.

We will keep link-anonymised research data we have generated for 6 years, this is due to the University of Leicester’s data retention policy.

If we share and store research data in a repository, it will be fully anonymised and aggregated. We will not share raw data in this way.

Who can I contact if I have concerns?

In the event of any questions about the research project, please contact the researchers in the first instance at ireacch@le.ac.uk. 

If you have any concerns about the way in which the research project has been conducted, please contact the Chair of the University Research Ethics Committee at ethics@leicester.ac.uk. 

The University of Leicester Data Protection Officer is:

• Data Protection Officer, University of Leicester, University Road, Leicester, LE1 7RH
• 0116 229 7640
• DPO@le.ac.uk 

For further details about information security, please contact the Information Assurance Services team.