This Privacy Statement provides information about the ways in which The People’s Trial process the personal information provided to us.
The People’s Trial respects your privacy. Any personal information that you volunteer will be treated in confidence applying reasonable standards of security, in accordance with the Data Protection Act 1988-2018 and with effect from 25 May 2018, the General Data Protection Regulations (“GDPR”). Any information that you provide will not be made available to third parties except in accordance with applicable laws and regulations. The National University of Ireland Galway (NUI Galway) has overall responsibility for ensuring compliance with Data Protection legislation as the Data Controller of personal data collected during the conduct of the study. All data is subject to NUI Galway Data Protection Policies and Procedures.
Who we are?
The People’s Trial is a Health Research Board (HRB, Ireland) funded project based within the HRB Trials Methodology Research Network (HRB-TMRN) and is based in NUI Galway, Ireland. The Principal Investigator of the project is Prof Declan Devane and the project is supported by a Steering Group.
What is the purpose of the study?
The People’s Trial seeks to enhance the public’s understanding of randomised clinical trials while giving people the opportunity to share their opinions and preferences about public engagement in randomised clinical trials.
Voluntary participation
Participation is entirely voluntary, and you have the right to withdraw from the study at any time. If you decide not to participate in this study there will be no negative consequences, and you will not be expected to give any reason for your decision. If you decide to take part, you are still free to withdraw at any time without giving a reason and without detriment to yourself. However, it will not be possible to remove your data from the project once it has been anonymised as we will not be able to identify your specific data. This does not affect your data protection rights.
What happens if I do not want to take part or if I change my mind?
It is up to you to decide whether or not to take part. If you decide not to take part, you do not need to do anything further.
Confidentiality
What information will you collect about me?
To participate in this research project, we will need to collect information that could identify you, called “personal identifiable information”. Specifically, we will need to collect your email address and demographic information.
The People’s Trial will collect information through this website in three ways:
- Via email
- Via web technical logs
- Via web forms
This information includes: name, email, type of stakeholder, gender, age range and country.
Email: If you choose to contact The People’s Trial via email, your details will be used only for the purposes for which you intended i.e. to receive a reply to your email request / communication. When your email has been actioned, the original message will be retained by The People’s Trial for a reasonable period of time. In line with GDPR requirements, your details will not be added to any of our mailing lists and all members on our mailing list have expressed explicit active consent to join this list. All data will be coded, meaning that your name will not be published, and it will not be disclosed. All data retrieved from The Peoples Trial will be securely stored in NUI Galway under the stewardship of the research team and destroyed after a period of 7 years as in accordance with the NUI Galway Data Retention Policy.
Use of cookies
A cookie is a small text file that may be stored on your computer or mobile device that contains data related to a website you visit. It may allow a website “remember” your actions or preferences over a period of time, or it may contain data related to the function or delivery of the site. Cookies can be set by the owner of the website or in some cases by third party services the website owner allows to present other information, run content or provide other functionality such as analytics.
Further information on cookies can be found at: http://ec.europa.eu/ipg/basics/legal/cookies/index_en.htm
Purpose for which data is processed
We ask people who participate if we can stay in touch to better enable people to take part in all the different stages of The People’s Trial using online software to identify people’s opinion. We ask if people participating are a health care professional or researcher, which country they are from, their gender and their age range because we would like to have a diverse group of people from different backgrounds taking part in the People’s Trial. This helps us check how successful this has been.
Under what legal basis are we collecting this information?
We are collecting and storing this personal identifiable information in accordance with data protection law which protect your rights. These state that we must have a legal basis (specific reason) for collecting your data. For this study, the specific reasons are “consent” which is “freely given, specific, informed and unambiguous” and “a public interest task”. We will collect the minimum amount of personal data required to carry out the research.
What are my rights in relation to the information you will collect about me?
You have a number of rights under data protection law regarding your personal information. For example you can request a copy of the information we hold about you.
If you would like to know more about your different rights or the way we use your personal information to ensure we follow the law, please consult the NUI Galway Data Protection Website https://www.nuigalway.ie/data-protection/
Will my participation in the study be confidential and my personal identifiable information be protected?
In accordance with data protection law, NUI Galway is the Data Controller for this project. This means that we are responsible for making sure your personal information is kept secure, confidential and used only in the way you have been told it will be used. All researchers are trained with this in mind, and your data will be looked after in the following way:
Only the Principle Investigator and co- investigators at NUI Galway will have access to your personal information, but they will anonymise it as soon as possible using a unique identifier code. Your name and any other identifying information will be removed and replaced with a random ID number. Only the research team will have access to the key that links this ID number to your personal information. All data collected during the study will be securely stored in NUI Galway under the stewardship of the Lead Investigator and destroyed after a period of 7 years.
Please also note that individuals from NUI Galway or regulatory authorities may need to look at the data collected for this study to make sure the project is being carried out as planned. This may involve looking at identifiable data. All individuals involved in auditing and monitoring the study will have a strict duty of confidentiality to you as a research participant.
What will happen to the findings of this study?
The results of the study will be published in a scientific journal regardless of the findings. You will not be identified in any report or publication.
Compensation
No payments are available for taking part in this study. Nothing in this document restricts or curtails your rights.
Has this study received ethical approval?
Yes, this study has received ethical approval from the following research ethics committee;
NUI Galway, University Road, Galway, Ireland.
Who is funding the research project?
The People’s Trial is a Health Research Board (HRB, Ireland) funded project based within the HRB Trials Methodology Research Network (HRB-TMRN)
What if there is a problem?
If you have a complaint that you wish to direct to members of the research team, please contact:
The People’s Trial research team,
School of Nursing & Midwifery, Room 235, Aras Moyola, NUI Galway, Galway H91 E3YV, Ireland info@thepeoplestrial.ie
If you wish to make a formal complaint to someone independent of the research team or if you are not satisfied with the response you have gained from the researchers in the first instance then please contact:
Vice-President for Research, School of Natural Sciences, National University of Ireland, Galway. Tel: +353 91 495768 or by emailing: vpresearch@nuigalway.ie
If you wish to contact us about your data protection rights, please email: dataprotection@nuigalway.ie or write to The Data Protection Officer, NUI Galway, Room A129, The Quadrangle, NUI Galway, University Road, Galway, Ireland and we will guide you through the process of exercising your rights.
You also have a right to complain to the Office of the Information Commissioner (https://www.oic.ie/) about complaints relating to your personal identifiable information: Tel +353 1 639 5689
