MaBIL - Maternal Body mass index and childhood Infection: a record Linkage study (MaBIL) | MaBIL

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What are we trying to do?

More than half (53%) of pregnant women living in Scotland in 2019 were overweight or obese. This is important because children born to women who are overweight or obese are more likely to have health problems, such as asthma and diabetes, when they grow up.

A small number of studies have looked at whether children born to mothers who are overweight or obese will experience higher numbers of infections when they are children and teenagers. The findings might not be that useful for mothers and children in the UK because these studies either included small groups of children, were carried out in another country or because of the way the information was collected. To answer our questions, we need to carry out a study that includes a large number of mothers and children from the UK.

There are also other factors that mean children born to mothers who are overweight or obese might be even more likely to get infections, such as:

Whether they were bottle fed as a baby
If their mothers had a caesarean section when they were born
Whether the children are also overweight or obese
If their mother took antibiotics when she was pregnant

The aims of this research study are to compare the number and types of infections in children who are born to mothers who are underweight, normal weight, overweight and obese; and to investigate if breastfeeding, caesarean sections, antibiotics and a child's weight mean children are more or less likely to get infections.

How will we do this?

The MaBIL study will include information about all children born in Scotland between 1st January 2004 and 31st December 2018. We will not collect any new information; instead, we will use information that has already been collected by NHS Scotland. We will get the information about mothers and their children from different sources, including:

Birth registration records – these include information about the baby and their parents or guardians. Almost all babies born in the UK will have one.
Maternity hospital records – a hospital record relating to the mother and baby's birth information.
Hospital admission records relating to any hospital care children have received since 1st January 2004
The Child Health Programme – a government programme which records information about children as they grow up, including their height and weight, and whether or not they have had certain vaccinations.
Prescriptions of antibiotics by general practitioners (GPs)

All of this information will be linked by the electronic Data Research and Innovations Service (e-DRIS) - which is part of NHS National Services Scotland (NSS) - using various pieces of personal information, including Community

Health Index (CHI) number, date of birth and postcode. Individuals who work for e-DRIS are experts in linking together these records and they will keep the information secure whilst they do this. Any personal identifiers (e.g. names, dates of birth, postcodes or CHI numbers) will then be removed before allowing the research team to use the dataset.

Will my information be kept secure?

Yes. Your information is currently stored by NSS, who will continue to store it during this research study. Once e-DRIS have linked together the different pieces of information, they will remove any personal identifiers (e.g. name, address, date of birth, CHI number) and then make the pseudonymised dataset available to the MaBIL research team.

Who is responsible for looking after my data?

The MaBIL research team is based within the University of Oxford and your information will never be stored here. Instead, the MaBIL research team will access it by logging into the NSS safe haven, which is a highly secure online portal. The research team will only be able to log into the NSS safe haven from one computer at the university which will be password protected and kept in an office that will be locked when empty. Only members of the MaBIL team with the correct approval will be able to view your information within the NSS safe haven.

The MaBIL team will be able to view your information and analyse it, however, it will not be possible to print or send any of the information to anyone else from within the NSS safe haven. All of the findings from the study will be about groups of mothers and children; we will never produce results that are about individual mothers or children. In addition to this, we will only be able to share results about groups of mothers and children when we have full approval from the e-DRIS team. This means it will not be possible to identify anyone when the results from the study are made available.

Can I choose whether to take part in MaBIL?

The study aims to include all children born in Scotland during 1st January 2004 and 31st December 2018, which is about 400,000 children. It is therefore not possible for us to ask all parents if we can use information about them and their child. For this reason we have applied for special permission to access the mother's and children's records without the permission of their parents.

One of the strengths of this study is that we will have a large sample size to help answer our research questions. However, this also means it will not be possible to contact every participant and request consent. In this case, we have applied for special permission to analyse the data without the consent of parents. The special

permission we have to use the data without consent is only given because the research we are doing can provide important information that would be very hard to get in any other way.

Can I opt out of me and my child being included in the study?

It may be possible to opt out, some individuals in Scotland have opted out of sharing their health data. For example, they have chosen to prevent confidential information being shared between organisations like their GP practice and hospitals. If you have already opted out of data sharing, at the time when the datasets are being linked or the linkage is being checked, then your data will not be included in our study. However, once the MaBIL team receive the data (with personal identifiable information removed) for the analysis of the mother's and children's health, the MaBIL team will not be able to identify any individual mother or child from the information it will hold and therefore they will not be able to exclude them.

For more information about the sharing of the confidential health data of yourself or your children, please contact Information Services Division (ISD) Scotland by emailing NSS.isdSHIS@nhs.net or by calling 0131 2757050. Alternatively, you can contact your GP or read more about Scotland's NHS opt out service, SPIRE.

Who is organising and funding this research?

MaBIL is led by Dr Victoria Coathup, a Researcher at the National Perinatal Epidemiology Unit (NPEU) in the Nuffield Department of Population at the University of Oxford. The study team includes Professor Jenny Kurinzcuk, Professor Maria Quigley and Dr Claire Carson from the NPEU, and Dr Sohinee Battacharya from the University of Aberdeen.

The research is being funded by the Nuffield Department of Population Health, University of Oxford, as part of Victoria Coathup's research fellowship.

What will happen to the results of MaBIL?

The results from MaBIL will be published in scientific journals, presented at scientific conferences and a summary of the results will appear on the NPEU website, with a link to all publications.

The results will also be made available to professionals and organisations who provide maternity care to women during pregnancy and health services to children. For example the results will provide information on:

Whether children born to women who have a low or high should be routinely followed up at particular time points during infancy and early childhood
The types of infections that children born to women with a low or high BMI are likely to experience

No. Due to the strict rules under which the MaBIL study team have access to these data, we cannot share the dataset with other researchers or third parties.

How long will my data be stored?

The results of MaBIL will be published in scientific journals. After a paper is published, we may be contacted by other researchers who want us to do a bit more investigation into one of our results. Therefore, we will store the personal data for three years after the study has officially ended.

Complaints

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer (data.protection@admin.ox.ac.uk), who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful, you can complain to the Information Commissioner's Office (ICO).

Who can I contact for more information?

For more information, please see the MaBIL website (www.npeu.ox.ac.uk/mabil) or contact Dr Victoria Coathup.