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Privacy Notice for social contacts in the ASSIST Global study

Your Personal Data

The University of Glasgow will be what’s known as the ‘Data Controller’ of your personal data processed in relation to ASSIST GLOBAL study. This means we oversee how your data is collected and stored by the researchers in your country. This privacy notice will explain how the University of Glasgow (United Kingdom), Universitas Gadjah Mada (Indonesia) and De La Salle University (Philippines) will process your personal data.

Why we need it

ASSIST GLOBAL is a school-based smoking prevention research study. In the study we are recruiting 13-14 year-olds who are influential among their school year group to become ‘Peer Supporters’. These peer supporters spread messages among their friendship networks via informal conversations about the risks of smoking and benefits of not smoking. Your school is taking part in this study. As part of the study, we are looking to see seeing how far messages have spread between people. We do this by asking participants to tell us who they speak to on a regular basis about the study. These people are the “social contacts” of participants in the ASSIST GLOBAL study.

If you are a social contact of someone in the ASSIST GLOBAL study, we will collect personal information about you, including your name, your relationship with the ASSIST GLOBAL participant, and your gender.

We record your name so that the participant can talk about you and their other social contacts as part of the survey or interview, and to check if the same social contact is mentioned more than once in different interviews. For example, we will check if a student talks about the same friends before and after the study.

We collect gender about social contacts so that we can measure how similar or different a study participant is from their social contacts. For example, to understand if students with mixed gender friendship groups talk more about smoking than students with single gender friendship groups.

We will only use name information to make sure that the information about social contacts is accurate. As soon as the study participant has finished their surveys and interviews, we will remove all names and personal information from research datasets and keep all named information confidential. We also remove the names of the original study participants so nobody will ever be able to identify personal information from the study data, apart from the research team who collect the data confidentially.

Legal basis for processing your data

We have a legal basis for processing all personal data. For the ASSIST GLOBAL study, the legal basis is public task. That is the legal basis for data processing is the public task of a University/Medical Research Council Unit to conduct research into adolescent health and social relationships.

We are also processing data about your gender. This information is sensitive and is referred to as special category data. We are processing this special category data on the basis that it is necessary to support this research project which is conducted in the public interest. That means, we collect this sensitive information because it is important to understand how things like gender and ethnicity affect health and wellbeing.

What we do with it and who we share it with

  • We only collect data that we need for the research project.
  • The research staff will adhere to their local university and national guidelines on storing your personal data securely. Your name and other information will be stored as encrypted data and in password protected files held at the Universitas Gadjah Mada/De La Salle University in your country.
  • Personal information about social contacts (your name) will be removed by researchers in your country and replaced with a pseudonym (an ID number that means that the names of social contacts mentioned by study participants are kept secret), so it will never be possible to find out the names of a social contact in the research data.
  • All the personal data we collect is processed by research staff in your country and then passed securely to be processed by staff at the University of Glasgow in the United Kingdom.
  • Data that is anonymised that does not contain any personal information about individuals who took part in the study, may be made available in the UK Data archive or a similar archive, so that other researchers can use it. We will always make sure these researchers use the data for genuine research and that there is no information that could be used to find out your identity.

How long do we keep it for?

Your personal data (e.g. names, contact details) will be retained by the university in your country for as long as is necessary for processing and as described above will be pseudonymised. After this time, personal data will be securely deleted. Fully anonymous datasets may be kept by the University of Glasgow for at least 10 years.

What are your rights?*

The University of Glasgow is working with two countries to help look after your data. As the lead university, the University of Glasgow is responsible for making sure that the university in your country looks after your data in the correct way. You have the right to information about why we are processing data on social contacts, and this privacy notice is how we are giving you that information. We also have provided study participants with information about how we process their data.

We are conducting this project in line with article 89 of the General Data Protection Regulation, which means that we will not provide you with the right to see data about you that was collected as part of the research study. You also will not be able to delete or modify the data.

The reason we will not let social contacts see, modify or delete their data is to protect the confidentiality of the study participants. Everything that the study participants tell us is confidential. This includes any information they tell us about social contacts. Confidentiality is why we won’t provide information to social contacts.

If you wish to discuss your data rights, please contact dp@gla.ac.uk.

Complaints

If you wish to raise a complaint on how we have handled your personal data, you can contact the University Data Protection Officer who will investigate the matter.

Our Data Protection Officer can be contacted at dataprotectionofficer@glasgow.ac.uk

If you are not satisfied with our response or believe we are not processing your personal data in accordance with the law, you can complain to the Information Commissioner’s Office (ICO) https://ico.org.uk/