“Tooth Selfie” – A new element of the CATFISH study – March to June 2019
Participant Information Sheet (PIS)
Thank you for taking part in the CATFISH study. We are inviting you to take part in “Tooth Selfie” – a new element of the CATFISH study. It is up to you whether or not you take part in this, and you will still remain part of the main CATFISH study. This information sheet explains what we are doing, why, and what it will involve. Please read it carefully and discuss it with others if you wish. Please contact us if you have any questions or would like more information.
Please also read The University privacy notice which can be found at http://documents.manchester.ac.uk/display.aspx?DocID=37095.
Who will do the research?
The CATFISH team at the University of Manchester.
Chief Investigator: Professor Iain Pretty.
What is the purpose of “Tooth Selfie”?
We would like to see more teeth!
The CATFISH study is trying to find out what effects fluoridated water has on tooth decay. Your child is one of approximately 2000 children taking part. Half of you live in an area receiving fluoridated water, and half of you live in an area receiving non-fluoridated water. We would like to look at as many CATFISH children’s teeth as possible to see if there are any differences in the amount of tooth decay between the two areas. The more children’s teeth we see, the more accurate the CATFISH study results will be.
Last year we invited all the CATFISH children to a clinic – so a CATFISH dentist could look at, and take some pictures of their teeth. Many of you told us you were happy to do this, but that you were unable to get to a clinic. So we have thought of a different way to see your child’s teeth – you take some pictures of them and send them to us. We think this might be quicker and easier than attending a clinic, and will still allow us to include your child’s dental health information in the CATFISH results.
Why have I been chosen?
Your child is taking part in the CATFISH study and we have not collected information about their dental health yet. We are inviting every CATFISH child who has not yet been seen by a CATFISH dentist to send us pictures of their child’s teeth.
If you did go to a CATFISH clinic and we have sent you this by mistake, please accept our apologies. You can ignore this information sheet and letter.
What will I be asked to do if I take part?
Take some pictures of your child’s teeth using a smart phone or digital camera, and send them to us. Please see “Instructions and Examples” (Version 1, 31.10.2018) for more details.
We believe the risks to you and your child if you take part in this are low. There is a slight risk that you could accidently send the pictures to someone else instead of us, or the pictures are intercepted. To reduce these risks, please crop the pictures, and double check the phone number or email address to send them to before pressing send. Once we receive them, we will transfer them to a secure storage place. All the pictures will then be looked at by a CATFISH dentist. If they notice anything in your child’s mouth that they think needs treating, we will contact you to let you know.
What will happen to my personal information?
We will take great care to make sure that the personal data we have about you is kept safely and securely. We already have the personal information you gave us when you consented to take part in the main CATFISH study. If you choose to take part in this additional element of the study then we will need an up to date mobile number and/or email address for you as this is how you will send us the images.
Only the research team will have access to this information.
We are collecting and storing this personal information in accordance with the General Data Protection Regulation (GDPR) and Data Protection Act 2018 which legislate to protect your personal information. The legal basis upon which we are using your personal information is “public interest task” and “for research purposes” if sensitive information is collected. For more information about the way we process your personal information and comply with data protection law please see our Privacy Notice for Research Participants (detailed above).
The University of Manchester, as Data Controller for this study, takes responsibility for the protection of the personal information that this study is collecting about you. In order to comply with the legal obligations to protect your personal data the University has safeguards in place such as policies and procedures. All researchers are appropriately trained and your data will be looked after in the following way:
- If you send us any pictures, we will:
- Check that all the pictures we receive us show only your child’s mouth. If their face or body is visible, we will crop this out.
- Pseudo-anonymise them – i.e. we will label them with a number that is unique to your child, and remove any identifiable information (e.g. name, email address and phone number).
- Save them on an encrypted drive at the University of Manchester.
- Delete the originals you sent (e.g. from WhatsApp / email account)
- We will anonymise your data, to the best of our ability, as soon as we practically can. The anonymisation process is irreversible.
- We will store the data for up to 15 years. The data will be stored securely on encrypted drives at the University of Manchester.
You can send the pictures through WhatsApp, by email, or upload them through the CATFISH website. WhatsApp has been given as an option as it is a free and easy way to send photos if taken on your mobile phone. WhatsApp has end to end encryption which means only the sender (you) and recipient (the CATFISH study) will have access to the message, once a message is delivered WhatsApp does not keep it on their servers. However, please note WhatsApp is not University of Manchester software so we have no ability to stop WhatsApp if they later change the rules around accessing data. You could instead upload the images to the CATFISH website or send the images by email if you prefer. Issues in sending images by email can occur if an incorrect email address is entered therefore we ask participant to check carefully if choosing this option. The CATFISH website image upload is GDPR compliant and is a secure way of uploading your images. If you would prefer to use a method not covered here, please contact us.
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. This is known as a Subject Access Request. If you would like to know more about your different rights, please consult our privacy notice for research (detailed above) and if you wish to contact us about your data protection rights, please email firstname.lastname@example.org or write to The Information Governance Office, Christie Building, University of Manchester, Oxford Road, M13 9PL. at the University and we will guide you through the process of exercising your rights.
You also have a right to complain to the Information Commissioner’s Office, Tel 0303 123 1113.
Will my participation in the study be confidential?
Your participation in the study will be kept confidential to the study team and those with access to your personal information as listed above. The pictures will be saved on a secure drive on computers that are secured with a password at the University of Manchester for up to 15 years.
What happens if I do not want to take part or if I change my mind?
It is up to you whether or not you take part in this. This is connected to the main CATFISH study, but is additional to it. You will continue to be part of the main CATFISH study regardless of whether or not you take part in this additional bit. If you change your mind, you can withdraw at any time without giving a reason and without detriment to you or your child. However, once the data has been anonymised, we will not be able to identify your specific data. This does not affect your data protection rights.
Will I be paid for participating in the research?
We will send you a £5 gift voucher as a thank-you for participating in this additional element of the CATFISH study.
What is the duration of the research?
This is a stand-alone element of the CATFISH study. We anticipate it should only take a few minutes to take these pictures and send them to us.
Will the outcomes of the research be published?
The data collected in this section will be used with other data collected throughout the main CATFISH study and the results will be published at the end of the CATFISH study.
Who has reviewed this research?
The CATFISH study and this addition to it have been reviewed by an independent group of people at Cambridge South Research Ethics Committee (REC reference 14/EE/0108) to protect the safety, wellbeing, rights and dignity of you and your child.
What if I want to make a complaint?
Please contact us if you have any concerns or complaints about this.
Please contact the CATFISH research team:
Michaela Goodwin (Project manager)
Tel: 0161 232 4711 or 0161 226 1211 (Monday – 9.00am – 5:00pm)
Iain Pretty (Chief Investigator)
Tel: 0161 226 1211 (Monday – Friday, 9.00am – 5:00pm)
Or write to us at:
The CATFISH study
Dental Health Unit
Lloyd Street North,
Manchester Science Park
If you wish to make a formal complaint or if you are not satisfied with the response you have gained from the researchers in the first instance then please contact:
The Research Governance and Integrity Manager,
Research Office, Christie Building,
University of Manchester,
Tel: 0161 275 2674.
What Do I Do Now?
If you have any questions or are interested in taking part then please follow the “Instructions and example pictures” guide enclosed. We will only contact you once about this additional element. If you choose not to take part and do not send us pictures, you will not hear from us again until it time to send you something about the main CATFISH study. If you have any questions please email Michaela.Goodwin@manchester.ac.uk, Laura.Mackay@manchester.ac.uk or call the CATFISH team on 0161 232 4704 or 0161 232 4711.