Obstetric Bleeding Study UK

Data Confidentiality

Women and people giving birth in England

The study will use information routinely collected by the NHS about your labour and birth and about your baby (or babies). This will all be linked together using yours and your baby’s NHS numbers, this will be done in a secure database kept by SAIL.  

This routine information will be anonymised once your information and your baby’s (or babies') information has been linked together and it will be deleted once the study has finished.

As well as this, if you bleed over 1.5 Litres or who have a blood transfusion will have a small amount of non-sensitive information collected about your birth which is routinely recorded in patient notes but not routinely recorded in the NHS databases. If you are part of this group, you will be assigned a trial identity code and your NHS number will be entered into the trial database. This will ensure your information is linked with the routine data collected.

Under UK Data Protection laws, Cardiff University is the Data Controller (legally responsible for the data security) and the Chief Investigator of this study is the Data Custodian (manages access to the data). This means we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited as we need to control your information in certain ways to obey certain laws and for the research to be reliable and accurate. To protect your rights we will use the smallest amount of personally identifiable information possible.

You can find out more about how we use your information by reading the Cardiff University privacy notice.

The data collected for the study will only be looked at and stored by approved people from Cardiff University team who are organising the research. They might also be looked at by approved people from regulatory groups to check that the study is being carried out properly. All the research team will have a duty of confidentiality to you as a research participant and we will do our best to meet this duty.

All of the research data will be kept securely for 15 years.  After this time the data will be destroyed securely.  During this time safety measures will be taken by everyone involved to maintain your confidentiality. Only members of the research team who have been given permission by the data custodian will have access to your personal data and any identifiable personal data will be deleted by the end of the study.

In agreement with Cardiff University’s, the Government’s and our funders’ policies we may share our research data with researchers in other Universities and organisations. This includes those in other countries, for research in health and social care. Sharing research data is important to allow peer scrutiny, re-use (and therefore avoiding duplication of research) and to understand the bigger picture in particular areas of research. Only anonymous data will be shared in this way.

In England; You have the right to opt out of your data being used, ask your GP or find out more https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/

Women and people giving birth in Scotland

The study will use information routinely collected by the NHS about your labour and birth and about your baby (or babies). We plan to link this together using yours and your baby’s CHI numbers, this will be done in a secure database kept by SAIL.  This routine information will be anonymised once your information and your baby’s (or babies') information has been linked together and it will be deleted once the study has finished.

If you who bleed over 1.5 Litres or have a blood transfusion you will have a small amount of non-sensitive information collected about your birth which is routinely recorded in patient notes but not routinely recorded in the NHS databases. If you are part of this group, you will be assigned a trial identity code and your CHI number will be entered into the trial database. This will ensure that in the future your information can be linked with routine data.

You need to tell us if you don’t want your birth data included in this study. To ‘opt out’ tell your midwife or your local maternity research team. If you do not know how to contact them, email our study team at OBSUK@cardiff.ac.uk and we can help you.

Further information regarding how NHS Scotland handles your data can be found by reading the Privacy and confidentiality when using the NHS | NHS inform

Under UK Data Protection laws, Cardiff University is the Data Controller (legally responsible for the data security) and the Chief Investigator of this study is the Data Custodian (manages access to the data). This means we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited as we need to control your information in certain ways to obey certain laws and for the research to be reliable and accurate. To protect your rights we will use the smallest amount of personally identifiable information possible.

You can find out more about how we use your information by reading the Cardiff University privacy notice.

The data collected for the study will only be looked at and stored by approved people from Cardiff University team who are organising the research. They might also be looked at by approved people from regulatory groups to check that the study is being carried out properly. All the research team will have a duty of confidentiality to you as a research participant and we will do our best to meet this duty.

All of the research data will be kept securely for 15 years.  After this time the data will be destroyed securely.  During this time safety measures will be taken by everyone involved to maintain your confidentiality. Only members of the research team who have been given permission by the data custodian will have access to your personal data and any identifiable personal data will be deleted by the end of the study.

In agreement with Cardiff University’s, the Government’s and our funders’ policies we may share our research data with researchers in other Universities and organisations. This includes those in other countries, for research in health and social care. Sharing research data is important to allow peer scrutiny, re-use (and therefore avoiding duplication of research) and to understand the bigger picture in particular areas of research. Only anonymous data will be shared in this way.

Women and people giving birth in Northern Ireland

If you bleed over 1.5 Litres or have a blood transfusion you will have a small amount of non-sensitive information collected about you birth which is routinely recorded in patient notes but not routinely recorded in the NHS databases. If you are part of this group, your data will be anonymously entered into the trial database. Your information will not be linked with routine data in the future.