BaBi Leeds study - Leeds Teaching Hospitals NHS Trust

BaBi Leeds study participant with members of the research team

A data linkage cohort study of babies born in Leeds and their mothers.

What is BaBi Leeds?

This is a project being run by BaBi Leeds and is part of a group of BaBi research projects all about families and children to help us to learn more about how families in our area and beyond can live healthier, happier lives.

This study has been generously supported by Leeds Hospitals Charity. Over £60,000 of funding has been used to recruit a dedicated research midwife, Jane Gavin, for the project, as well as fund development to the electronic systems used to store the patient data.

Born and Bred in Leeds video

You’re having a baby. We hope that this is a wonderful time with much excitement and lots of people offering love, help, and support. We would like to be part of that. We’d also like to ask you for your help. We’re doing research into children’s health in their early years so that we can improve the lives of the next generation. This short video is designed to help explain why we want to know more about you and how that information, our data, could ultimately help everybody, including you and your family.

We also want to reassure you that you can trust us and their information about you will be kept safe and secure we’re looking for patterns in data any relationships between causes and effects so that we can look at the bigger Health picture and that big Health picture needs lots of information to make this data really useful we’re asking for your cooperation to monitor you and your baby over months or possibly even years this could help in lots of ways for instance recently we wanted to look at how air pollution affected babies health this meant checking and comparing those babies who had asthma with how close they lived to busy traffic congested roads the results clearly show that there was indeed a link.

Another recent example showed that people with access to parks and green spaces have better mental health. Important information like this isn’t just ignored and is published in a report that no one will ever read. We use this information as hard scientific evidence to influence and persuade the people who look after us locally and nationally to change and improve the world we live in for the better, which might mean banning dirty diesel buses in certain areas, encouraging Greener Transport Solutions, or looking at new medical methods in GP practices to provide better or faster care.

If you agree to take part, we’ll gather information about you and your baby either automatically from your routine medical records or by talking with trained professionals like your midwife. None of this information will ever be used to judge you or your lifestyle but could be used to show up or test better ways of caring for you and your baby, so how do you fit into all of this? It starts with your midwife.

When you come in to see your midwife, they’ll ask you if you agree and consent to help with the project completely anonymously. It’s really important to us that you don’t ever feel any pressure or obligation to take part. It’s entirely your decision whether you’d like to lend a hand and change your mind at any time, so please feel free to ask any questions. Thank you in advance. We’re really grateful for your trust and cooperation. You promise to respect your rights throughout this process. With your support, we’re leading the way to make where you live a better place.

How does BaBi Leeds work?

When you see your midwife, they will invite you to become part of the study. If you agree to take part, health researchers will join together lots of data about you and your child so that we can look at ways to improve health, care and services through research and planning in Leeds and beyond. We are asking every pregnant woman in Leeds to join the project.

Why do BaBi Leeds want to use my information?

By linking information from both your patient records and your child’s patient record, we can build up a much clearer picture of people’s lives and answer questions that may help to improve health, care and services through research and planning.

Your information can help us begin to explore questions like:

Are there relationships between things that happen in pregnancy and children’s future health?
How many children in our area have asthma? Are children in some areas more likely to get asthma than children in other areas?
How many mums in our area experience postnatal depression or diabetes in pregnancy? What could be done to help prevent depression or diabetes and provide support for the family?

What information do BaBi Leeds want to use?

Lots of organisations regularly collect data about the services they provide to you or your children; this is known as routine data. The NHS keeps health records so they can provide health services to you. Social Care keep records about services they provide to you and your family. Education organisations keep information to help them to provide services for your children in schools and so they know what they achieve. All of this information is collected electronically and stored separately on different systems.

The diagram below shows some of the different organisations that we will contact to link information from your patient record and your child’s patient record, or to help us to contact you in the future.

Nat child measurement programme
NHS Digital
Local authority & social care
Other research studies
GPs & Dentists
Midwifery & Health Visiting
Children’s Centres
Education & schools
Dept of work and pensions
Voluntary organisations

How will BaBi Leeds get my information?

We would like to provide some personally- identifiable details such as name, date of birth, address and NHS number to each of these organisations so they can send us data back about you and your child regularly to get a more complete picture of people’s health and lives. This will be sent using a secure transfer system to keep your information safe.

How will BaBi keep my information secure?

BaBi Leeds is based at Leeds Teaching Hospitals NHS Trust. All data will be stored securely there and will be treated confidentially. Our systems are password protected and very secure. We will keep information that might identify individuals (such as name and address) separate from other information about participants.

Only a very small number of authorised people will have access to any data that identifies you, like your name and address. These include members of the team involved in linking your data together and those involved in keeping you up to date about the study. The researchers who will analyse the data to answer research questions won’t have access to your personal data as we will remove the information that identifies you so they won’t know it’s you and it’s anonymous.

Anonymous data will be used for research and service planning. As we want to look at how people’s lives and health change we will keep your information and build on it over time.

How will my information be used?

Your information will only be used for research and service planning. Any sensitive information from BaBi will only be made available to researchers who have relevant scientific and ethics approval for their planned research under restricted access arrangements which make sure that the information is used responsibly and safely. Personally-identifiable information such as name and address are never included in the results and no individual can be identified from the research we publish. BaBi Leeds will also use your contact details to keep you up to date with the study and to let you know about other relevant research studies that are happening that you may wish to be involved in.

How can I find out what my information has been used for?

We will publish our findings in journals and on our website. It won’t be possible to identify you in any of the findings because the data used is anonymous. You can also get in touch with us using the contact details below if you would like to know more or have other questions. We will not send you any individual results from any of the research in the study. This is because we are looking for patterns in the data of thousands of participants and not looking at individual people.

Why should I take part?

Taking part is entirely voluntary and it is up to you whether you decide to join the project. There is no long questionnaire to complete or samples to give, just your permission to allow us to access your data. While there is no direct benefit to you or your child in taking part, we hope that we will learn from all of the information we do get and this will help us to improve health, care and services through research and planning for everyone in Leeds. This might be through improving the way health and care services are delivered in the future or finding new relationships between our genes and health.

What if I don’t want to take part?

We won’t take any data about you or your child until you have told us that we can. Your midwife will ask you whether you would like to take part at one of your appointments. If you don’t want to take part, just let them know. It won’t affect the care you receive.

What if I change my mind?

You can change your mind at any time. If you decide to join the project when you speak with your midwife and then later change your mind you can contact us and let us know using the details below and we will not collect any further data from you or your child. This won’t affect the care you receive.

More information

There is more information available about the project in our leaflet or you can get in touch using the details below.

BaBi Leeds Patient Information Leaflet

There is also more information on how we use your data online here:

If you would like a printed copy of any of these documents please email or call us to request one.

Get in touch

If you would like to contact us about the project or to make a complaint, please contact us by:

Email: [email protected]

Write to us: BaBi Leeds, Department of Obstetrics and Gynaecology, Room 8.8, Level 08, Clinical Sciences Building, St James’s University Hospital, Leeds LS9 7TF

Telephone: 0113 2066473

Patient Advice Liaison Service (PALS) Contact Details:

Email: [email protected]

Tel: 0113 2066261