1.  Why are we collecting this information (the data)?

The Baby Sleep Project is a suite of resources to support families with following safer sleep advice. Research has shown that following safer sleep advice every time a baby sleeps can prevent Sudden Unexpected Death in Infancy (SUDI), but it is not always easy to follow, and some babies have more underlying risks than others.

The National Institute of Health Research (NIHR) has funded us to create these resources and do some research to see how well they work. The research team and the University of Bristol will be responsible for the data collected (they will be the data controllers). 

The baby sleep project resources can be used by health care professionals in conversations with families, to help them to overcome some of the barriers they may face to following this advice.

The research also involves families and health professionals filling out questionnaires and taking part in interviews to help the researchers understand how and why the resources may or may not help.

The study is being run by researchers at the University of Bristol, funded by the National Institute for Health Research. 

If there is anything you do not understand, or if you would like more information, please email the research team at: babysleep@bristol.ac.uk

You can find more information about the study on our website, here:  babysleepresearch.co.uk

2. What data are being collected?

Depending on which resources are being used, there may be variation in which data are collected.

The Baby Sleep Planner only:

The first set of questions in the baby sleep planner will ask you about yourself and the baby you care for. The questions will ask for things like, the baby’s sex, age, ethnicity, birthweight, whether they are a twin or not and how long the mother was pregnant for. There are groups for each answer, for example, when asking about how long the mother was pregnant for (gestation) the question will ask “was the baby born before 37 weeks gestation (were they born ‘preterm’)? – Yes or No”. We will do this to collect the information that we need, but it makes it harder to identify any one person from the data.  You can enter your baby’s first name when you make your plan, but this is not kept by us.  

All resources:

No questions within any of the resources ask people to identify themselves. We will not ask for any names or addresses. Most of the resources are for watching or reading and won’t ask you to input any data.

The research data:

Questionnaires for families include questions about how you feel about being a parent, and ask you to tell us about where and how your baby sleeps (in a sleep diary). In your responses, please only write answers that you are happy to share with the research team as submitting your form gives your consent for us to use the information. If you do not wish to be identified please do not add any comment that gives identifiable information. Your responses will be collected as you submit them and shared within the research team. Confidentiality will be respected as far as we are able and information will not be used in an inappropriate way.

Once you have submitted your answers you cannot withdraw them again, but if you change your mind about taking part you can close your browser and choose not to continue.

Questionnaires for health professionals include questions about embedding the new resources into your practice. These are anonymous and recorded on a rating scale.

The data collected as part of the interviews will be transcribed and de-personalised, meaning that references to anything which could identify a speaker (for example a birth date, or the name of a health centre) will be removed from the transcriptions prior to analysis.

If you would like to be sent a copy of the results of the research, we will keep your contact details to do that, but they will be deleted when we have sent them.

The handling, processing, storage, and destruction of these data will be compliant with the Data Protection Act 2018 and General Data Protection Regulations.

3. Who will the data be shared with?

Only the research team will see the data during the study. At the end of the study, all names and any data which could identify a person will be removed from our records. After the study finishes, the dataset (but with only study numbers as identifiers) may be made available for future research via the University of Bristol Research Data Repository (https://data.bris.ac.uk/data/). Other researchers may ask to see these responses in the future, but only if they have valid scientific requests and all ethical approvals are met. Where a monitor or audit is required of our study (by a regulated body), regulated auditors may have access to personal data for audit purposes only.

The results of this study will be shared with other health staff and parents by reports in medical and health journals, newsletters, and by the research team talking about the anonymised results at conferences.

4. Is any personal data being transferred outside of the European Economic Area (EEA)?

No 

5. How long will the data be kept for?

Data will be stored on password-protected computers, in accordance with University of Bristol guidelines. We will store the anonymised research data indefinitely, and a minimum of 10 years. 

6. Can I stop my data being used?

Once responses to the questions within the baby sleep planner have been submitted, we cannot delete the responses because at that point we cannot identify who has submitted them. Once responses to the questionnaires or interviews have been submitted, we can delete them as long as we have not started the analysis. After we have analysed the responses it becomes impossible to take out individual responses. To have your data removed, please email babysleep@bristol.ac.uk and we will be happy to comply with your request in full, or providing a full reason as to why we can’t – if analysis has already begun.

7. Who can I contact about this study?

If you have any general questions about the study please contact the research team: babysleep@bristol.ac.uk

If you have questions about the General Data Protection Regulations (GDPR), or data processing in this study, please contact the University of Bristol’s Data Protection Officer: data-protection@bristol.ac.uk