PLANNER DATA PRIVACY NOTICE
1. Why are we collecting these data?
The Baby Sleep Planner is an online tool to help families to plan where and how their baby will sleep on busy nights, when sometimes the normal routine doesn’t work.
Research has shown that sleeping safely is important every time a baby sleeps and that some babies die from Sudden Unexpected Death in Infancy (SUDI) when they are being looked after by someone who isn’t the mother or main carer.
The National Institute of Health Research (NIHR) has funded us to make this tool and do some research to see how well it works. The research team and the University of Bristol will be responsible for the data collected (they will be the data controllers).
The sleep planning tool can be used by health visitors with parents/carers, or by parents/carers by themselves, to make a plan for keeping baby safe on busy or disrupted nights.
We hope this tool will help parents/carers when there is any change in plans e.g. when moving house or after a night out. Changes to the normal routine can double the risks for a baby so using this tool will help to keep them safe.
The tool asks questions about the parent/carer and the baby, like whether the mother smoked during pregnancy, and whether the baby had a low birthweight. Answers to these questions mean the tool is able to give you advice about the possible risks of SUDI. Your answers will also help us as researchers to understand the variation of risk in the population. The tool then asks questions about sleeping plans for the baby, like, does the parent/carer plan to sleep in the same room as the baby? And, what position they plan to put the baby in for sleep.
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?
Most of the time, health professionals will be using this planning tool with parents/carers, but sometimes, parents/carers might be using the tool by themselves.
The first set of questions in the tool 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.
No questions within the tool ask people to identify themselves. We will not ask for any names or addresses. You can enter your baby’s first name when you make your plan, but this is not kept by us.
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
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, any responses to the tool (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.
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.
6. Can I stop my data being used?
Once responses to the questions within the tool have been submitted, we cannot delete the responses because at that point we cannot identify who has submitted them. After we have analysed the responses it becomes impossible to take out individual responses.
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: