GDPR – IRAS 226391
New data protection legislation comes into effect across the EU, including the UK on 25 May – the General Data Protection Regulation (GDPR) which will replace the current UK Data Protection Act 1998. This means that we need to provide you with some further information relating to how your personal information will be used and managed within this research project. This is in addition to the details provided within the information sheet that has already been given to you.
This research is funded by NHS Health Scotland who were asked to carry out work examining the effects of minimum unit pricing for alcohol by the Scottish Government. The University of Sheffield is carrying out the research and will act as the Data Controller for this study. This means that The University of Sheffield is responsible for looking after your information and using it properly. In order to collect and use your personal information as part of this research, we must have a basis in law to do so. The basis that we are using is that the research is ‘a task in the public interest’.
As we will be collecting some data that is defined in the legislation as more sensitive (information about your health), we also need to let you know that we are applying an additional condition in law: that the use of your data is ‘necessary for scientific or historical research purposes’.
Further information, including details about how and why the University processes your personal information, how we keep your information secure, and your legal rights (including how to complain if you feel that your personal information has not been handled correctly), can be found in the University’s Privacy Notice https://www.sheffield.ac.uk/govern/data-protection/privacy/general.
How we are processing your data
The University of Sheffield is the Data Controller for the research study. Data collected as part of the study is processed by The University of Sheffield, Figure 8 (a research company who focus on alcohol and drug-related topics) and third-party transcription companies, who will produce written transcripts of recorded interviews. As a university we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information 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. 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.
Data collected from participants is pseudonymised. This means that a key code or number has been assigned to your data and your name has been removed from it. If you have consented to take part in a second qualitative interview, your interview will be recorded on a data-protected, encrypted recording device. Individual interviews are assigned a key code before they are electronically transferred, using a secure system, to an approved transcriber/transcription company with agreed confidential and secure data storage systems in place. Your name will not be included with your data and you will not be identifiable in any project outputs, such as reports or presentations. We may use some direct quotes from what you say in project reports and other outputs. Where we do this, we will make sure we do not include identifying information and we will use a false name. For example, if we were quoting someone called “Anna”, to help protect her identity we would change the name used in the report to something else, such as “Rachel”.
How we are storing your data
The University of Sheffield will keep identifiable information about you for up to 10 years after the study has finished. Data will be stored in secure, locked cabinets with access limited to the research team. Electronic data will be stored on the university secure password-protected servers, with access limited to the research team. It is a condition of the funding agreement for this research that the funder (NHS Health Scotland) may be able to request that all data, documents and material relating to the research be returned to them upon completion of the project, or if earlier, upon termination of the agreement. If this occurs, transfer of data between NHS Health Scotland and the University of Sheffield, will be via an encrypted device. Electronic and hard copy data will be couriered between the two organisations. Data held in long term storage by Health Scotland will be on secure, password protected servers. Any hard copy or paper data will be stored in a locked cabinet with restricted access.
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.
If you change your mind about participation after the interview, please advise us so that we can retrieve and destroy your data or return it to you (contact Dr John Holmes phone: 0114 222 6384 email: john.holmes@sheffield.ac.uk). We will not be able to retrieve your information after it has been combined with that from other people in the study.
How we are using your data
Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government. Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance. Where there is a risk that you can be identified, your data will only be used in research that has been independently reviewed by an ethics committee.
Your anonymous information will be combined with that of other participants. The combined data will be used to produce project reports, academic publications and presentations. At the end of the project, the study findings will be available on a University of Sheffield website:
https://www.sheffield.ac.uk/scharr/sections/ph/research/alpol/index
Complaints
If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).
Our Data Protection Officer is Anne Cutler and you can contact her at A.Cutler@sheffield.ac.uk. Contact number 0114 2221117.
If you have a concern about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions. Please contact the Principal Investigator, Dr John Holmes, University of Sheffield. Phone: 0114 222 6384 email: john.holmes@sheffield.ac.uk.
If you remain unhappy and wish to complain formally, you can do this by contacting Professor John Brazier, Dean of ScHARR, The University of Sheffield Tel: (+44) (0)114 222 0726 e-mail: j.e.brazier@sheffield.ac.uk.
Who has reviewed the study?
All research involving people is looked at by an independent group, called a Research Ethics Committee, to protect your interests. This study has been reviewed and ethically approved by the West of Scotland Research Ethics Committee 3.
Contact details
If you would like further information about the study, please contact Dr Penny Buykx, at the University of Sheffield. Phone: 0114 222 5202 email p.f.buykx@sheffield.ac.uk
If you would like to discuss your decision about taking part in the research with someone who is independent of the project, please contact Mr Andy Irving, a Research Associate at the University of Sheffield. It is part of Andy’s job role to help make sure the preferences of service users are respected in research.
Phone 0114 222 4292 Email a.d.irving@sheffield.ac.uk