Privacy

Youth health connections – JournHey? app deployment and testing

Dr Andrew James Williams, Dorothy Currie, Kenneth Boyd, Lynsey Brown, Elliot Cruickshank, Zoltan Kiss, Dr Tim Storer and Tess Vaughan

The JournHey? app is part of a research project led by Dr Andrew James Williams at the University of Edinburgh. The app is for people aged 8-18 years of age. The information you provide in the app will be used for health research. Helping us to understand and improve the influences on your health.

The attached sheets are to help you decide if you want to take part in our project.

You can speak to your parent(s) or guardian before you decide if you want to take part. Please read the full research project participant information leaflet linked below.

What is the project about?

JournHey? is an app for children and young people about health. Using the app will help you, and researchers, find out what helps or stops children and young people from being healthy where they live. The app is focused on your diet, physical activity, sleep and wellbeing.

In the app you will be able to chat with other app users about the influences on your health. When you find other young people experiencing the same influence you will then get the chance to create a petition asking for changes to be made.

As a new app we are also keen to hear what you think about it. So, we will be sending users a feedback survey, to help us modify and improve the app.

Policy effective: 05 November 2024

Collection of data

We will need to use information from you for this research project.

This information will include your:

  • Name
  • Gender
  • Date of birth
  • Postcode
  • Email address
  • School (if used as part of a school project)

We will need to use the information you provide within the app to help administer the app and for research.

  1. Daily check-in: This is four sliders on the main app screen on your diet, exercise, sleep and wellbeing. Whenever using the app, you can move each slider up and down depending on whether you feel that recently each of those areas of your life have been more or less healthy.
  2. Daily question: Each day you will get a notification about a new question for you to answer. Like the daily check-in sliders these questions are about your diet, exercise, sleep and wellbeing. They are questions used in other research projects and will help us compare your data with other statistics. Most days it will just be a single question that you can answer quickly. Once a week the question will ask about the influences on your health that week. Once a month it will be a longer set of questions.
  3. Topics: This is the discussion board part of the app. Here you can start discussions about the influences you have found that made your diet, exercise, sleep and wellbeing better or worse. You will need to decide whether the discussion relates to: time, physical spaces, headspaces, other people, costs or other. When you post a discussion you and anyone responding will not be identifiable, but you can choose whether to list your gender, age group, approximate location or an interest to help other users understand the post. You will be able to follow and respond to the posts made by others. As you will be writing and responding to other young people you will need to think about how they might react. Make sure you don't share anything you don't want others to know. Each post will be reviewed by a member of the research team before it is posted to make sure it is safe to share.
  4. Petitions: If lots of people join a discussion about similar experiences, you can ask to start a petition. A petition is when lots of people sign up to indicate that they want something to change. The petition will relate to an influence on your health and you will be asked to say who needs to make the change you want (e.g., your head teacher, a politician, etc.). You won't see the names of the people who sign the petition inside the app, but the person receiving the petition will be told the number, age groups and approximate locations of the signatories.
  5. Profile: This is where you can update your profile information and change your avatar. If you give permission for the app to collect data on your exercise levels automatically from the phone, or to access the photos on your phone then this can be turned off from your profile screen. If you have any problems with the app these can be reported using an email address on your profile screen.

Once a month, for the first three month we will email you a short feedback survey so you can give us your opinion on the app and any suggestions you have, this will take 5-10 minutes to complete. We will link your survey responses to the information you have given us on your age, gender and location to help us understand if the app is working better for some young people than others.

People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead. It is useful for us to have your postcode as this allows the researchers to look at data about your neighbourhood. This neighbourhood data includes whether it is in a rural or urban area and how many people live there. But we will contact you to suggest ways that your approximate location could be identified in the app, and you can select the one you prefer. You can then use this if you are starting a topic about an influence only relevant to people who live near you. We will keep all information about you safe and secure.

Your data will only be viewed by the research team. All the data gathered using the app and evaluation form will be anonymised before being used for research. This means that parts of the data will be edited or deleted such that no-one, including the researchers, could use any reasonably available means to identify you from the data. All electronic data will be stored on a safe and secure university server only accessible to the research team. Your consent information will be kept separately from your responses in order to minimise risk. If you collect data in the app for a school project, the data you provide within the project will be used to create an anonymised report for your teacher or school. No individual level data will be shared with the school and the research team will make sure that no one can be identified from the summary report.

User permissions needed

We would like your permission to send notifications, gallery & media accessibility. These are not necessary for the running of the app, so can be turned off at any time.

Children's privacy policy

As this app is designed for use by young people, parental consent is needed. We will ask for an email address for someone with parental responsibility who can consent to the participation of anyone aged less than 18 years. Please read one of the appropriate participant information sheets linked before for more information.

Data security

Will my taking part be kept confidential?

All the information we collect during the course of the research will be kept confidential and there are strict laws which safeguard your privacy at every stage. The research team will not disclose information about who participated in the study to anyone. The stored data are anonymised and encrypted.

What are your choices about how your information is used?
  • You can stop being part of the study at any time, without giving a reason. To do this you need to close your account in the app and uninstall it. This will delete any not yet anonymised data you have submitted through the app, but your anonymous discussion posts and signing of petitions will not be deleted.
  • Once a month the research team will take a backup copy of everyone's data from the app. These backup copies will be anonymised so that no one can be identified. This also means that it will not be possible to delete your anonymised data, if you leave the study.
  • We will contact you annually to check that you continue to consent to being part of the project. If you stop consenting to be part of the project your account will be closed and your identifiable data will be deleted, apart from petition signatures.
  • We need to manage your records in specific ways for the research to be reliable. This means that we won't be able to let you see or change the data we hold about you.
Where can you find out more about how your information is used?

You can find out more about how we use your information

The University of Edinburgh is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Edinburgh will keep identifiable information about you for as long as you remain a user of the app and provide consent. But this data would be deleted as soon as you close your account and stop using the app. We will keep your anonymised data for a minimum of 10 years.

How will my data be used, and how will the results of the study be used?

The data will be analysed as part of the research study. It will then be published in research publication(s)/conference proceedings. Other researchers will be able to apply to use the data. These researchers will need to demonstrate that they are asking a relevant research question and have ethical approval for their study. They will only be given access to anonymised data. When published the data will be in an anonymised form, which means that no-one could use any reasonably available means to identify you from the data. With your consent, your anonymised information may also be kept for future research. A summary of the research findings will also be posted on the app discussion topics and project website (https://health.ed.ac.uk/research/current-research/crowdsourcing-for-adolescent-health).

Who has reviewed the study?

The study proposal has been reviewed by the University of Edinburgh School of Health in Social Science Research Ethics Committee (approval code: 24-25NUST001).

Who can I contact?

If you have any further questions about the study, please contact the lead researcher, Dr Andrew James Williams (andrew.j.williams@ed.ac.uk).

If you would like to discuss this study with someone independent of the study, please contact Dr Stephen Malden (stephen.malden@ed.ac.uk).

If you wish to make a complaint about the study, please contact Professor Matthias Schwannauer, Head of the School of Health in Social Sciences (headofschool.health@ed.ac.uk) and the college Research Governance Team (cahss.res.ethics@ed.ac.uk).

Information Documents (Users and Parents)

This privacy policy page may be reviewed and updated from time to time.