All of the researchers involved in this study have a duty of confidentiality to you and we are not allowed to tell people who are not involved in the research about you and your family. We would only break confidentiality if we believe you and/or your child/ren are at risk of harm.
Data will be managed according to Medical Research Council best research practice guidelines. Your personal contact details (i.e. your name, address, telephone numbers) will be kept separately from the information we collect. Your family will be assigned a code number so that we can do this. All the data we collect will be stored securely with strict access controls (such as locked cabinets or password-protected computers in locked offices). The information/data collected by researchers from the Universities of York and Exeter will be entered onto a central secure database that is managed by the University of Sheffield. Your data can only be accessed by members of the research team who are working on this study at the three Universities involved. NHS digital will also have access to some data (NHS number, gender, postcode, date of birth) to facilitate linkage to the A&E dataset so that we can look at when you or your baby had to seek medical attention during the time of the trial. This is to find out if the study has changed the way you access the A&E department. You and your baby will not be identified in any reports or publications that we write about this study.
Video recordings of you with your child will be stored in accordance with University of York guidance and data protection requirements. The recordings are coded and these codes are stored on the study database.
Data from the study will be stored for at least 10 years following completion of the study. Anonymised information we have collected about you may be used in the future to support other research studies so that we can learn more about family health and wellbeing and how best to support parents and babies to have a happy and full life. We may also combine anonymous results from this research study with information from other research projects.
The flow chart below helps explain where your information is shared;