Video summary
The session focused on health data linkage across major longitudinal studies in the UK, highlighting four core birth cohorts: the National Child Development Study (NCDS), the British Cohort Study (BCS70), the Millennium Cohort Study (MCS), and Next Steps. These studies track individuals from birth through adulthood, collecting rich multidisciplinary data that includes health behaviors, anthropometry, and biomarkers. Recent updates have expanded these resources significantly, such as the inclusion of genetic data in the Next Steps cohort for the first time and the availability of polygenic scores across all four cohorts. Additionally, new initiatives like the Generation New Era study aim to follow a nationally representative sample of 30,000 children born this year, with a specific focus on developmental inequalities and ethnic minority representation.
A significant advancement discussed was the role of the UK Longitudinal Linkage Collaboration (UK LLC), which facilitates the connection of survey data with administrative health records like hospital admissions, outpatient visits, and death registrations. This linkage is currently available for England and is expanding to include Wales and Scotland later in 2026. Beyond NHS records, researchers can now link survey responses with credit history data from reference agencies, pension enrollment histories, and energy performance certificates. These connections allow for a deeper understanding of how socioeconomic factors, financial stress, and environmental exposures influence health outcomes, providing a comprehensive context that administrative data alone cannot offer.
The presentation also introduced the UK Census Longitudinal Studies, which provide access to massive datasets derived from census records dating back to 1971 in England and Wales. Unlike cohort studies with smaller sample sizes, these census-based studies cover over half a million individuals per census cycle, making them ideal for researching underrepresented groups such as specific ethnic minorities or unpaid carers. While the depth of health information is more limited compared to cohort studies, the sheer scale of the data allows for robust analysis of mortality trends and long-term health patterns. Access to these unique datasets requires an application process and accredited researcher status, but they offer bespoke variables tailored to specific research questions, including weather and pollution data available in Northern Ireland and Scotland.
Finally, a case study from Northern Ireland demonstrated the practical value of linking the Northern Ireland Longitudinal Study with local maternity services records. This linkage enabled researchers to track over 44,000 pregnancies and analyze trends in maternal obesity, weight changes between pregnancies, and associated health complications. The data revealed shifts in the demographic profile of mothers, such as an increase in mean age and a rise in obesity rates entering pregnancy. By combining socioeconomic census data with clinical information from maternity notes, researchers can identify hidden insights into how social determinants affect maternal and child health, ultimately informing future public health strategies and interventions to address rising risks in the region.
Read the full video transcript
Okay everybody it's 11:35 so we will
make start with our next session. Um my
name is Mars Smith. I'm the director of
health and biomedical surveys at the
national center for social research. Um
and I'm chairing the session of
lightning talks um looking at data
linkage uh on different longitudinal
health related studies. Um so in this
session we will have four short talks um
and we will take questions at the end.
So as we go as you have your questions
put them in a Q&A box and we'll take
them all at the end. So first up we have
uh Richard Silverwood. Um welcome
Richard. Uh Richard will tell us about
uh health data linkage uh in at CLS's
national longitudinal cohood studies
and Richard is professor of statistics
and chief statistician at USL center for
longitudinal studies. He has applied
interest across health and social
research and his methodological work
covers handling missing data the
analysis of linked administrative data
and various aspects of making causal
inferences from observational data. So
I'm handing over to you, Richard.
>> Great. Thank you very much. Just put a
timer on myself. Um, okay. So, thank
you. Yeah, the the title here does major
on health data linkages, but as I was
putting this together, I realize there's
a a lot to cover in terms of recent
survey data as well. So, there'll be a
bit of everything. I'll have to go
through quite quickly because 10 minutes
isn't very long. [snorts] Um, okay. So,
what do we do at CLS? We run uh a number
of different um uh nationally
[clears throat] representative birth
cohorts. So these are uh studies
following individuals born in a specific
period of time. So maybe in one week or
in one year across the rest of their
lives. So I'm going to be talking mainly
today about these four core birth
cohorts that you see here. So the first
the National Child Development Study
were all born in one week in 1958 uh
across all of Great Britain. The British
cohort study were born in one week in
1970. Again, across Great Britain. I'll
skip to the Millennium Cohort Study who
uh a sample of those born uh right
across the UK between 2000 2002. Uh and
then next steps were not recruited until
they were age 13 or 14 in 2004, which
means they were born in uh 1989 to 90,
but we don't see them until they're
about age 14. And all of these are
around 16 to 20,000 individuals at
initiation. So they're reasonable sample
sizes.
This figure shows um the ages or the
points in time at which we've collected
data on the individuals in these four
studies. Um so you can see that for
NCDS, BCS70, and MCS, they're we're
collecting data at pretty uh regular
points in time right across the life
course. Uh but you'll see that for next
steps, we don't collect any data up
until their recruitment at age 14 as I
just explained. And you can also see
from this figure uh the current age that
these cohorts are at. So NCDS are in
their 60s and retiring or approaching
retirement. BCS7 are in their 50s and
next steps in their 30s and MCS in their
20s.
So the data that we collect in these
cohorts are, you know, very uh
multiddisciplinary. Um but today we're
going to be focusing on the the health
data. We collect fairly um similar
information across these different
cohorts at similar points in time. Um
but the the information that we collect
obviously differs a bit with time. So
we're interested in different things in
childhood versus adolescence versus
adulthood for example. Uh but some um
some domains that we're or some
constructs that we're collecting data on
those ones down the bottom are things
that we're collecting information on
consistently throughout the life course.
So you'll see that there's some or many
different health and well-being measures
that are a relevance today.
Um so this figure shows the recent and
near future data collections across
these uh across these four studies. So
the NCDS recent data collection uh was
interrupted by COVID and eventually
completed in 2024. BCS70 was out in the
field recently until 2023.
Uh next steps similarly 2022 to 2023.
And MCS uh completed the most recent
data collection in 2024. And all of
[clears throat] these the data from all
of these data collections are now
available uh largely from UKDS. I'm
going to talk about these in a bit more
detail over the next few slides. Um,
looking forward a little bit, we can see
that later on this year, we have a
planned joint data collection, a web
survey between NCDS and BCS70. [snorts]
And further ahead, still in 2028, we
have a planned a27
survey in MCS.
So the next few slides I'm going to very
briefly give an overview of some of the
health data in each of these most most
recent sweeps of data collection. Uh so
next steps age 32 these data have been
available I think since 2024 now. Um
there's lots of the the typical things
that we ask about in terms of uh general
and long-standing health problems some
um anthropometry and lots about um sort
of health behaviors. And importantly
here we collected um saliva which means
that we now have DNA and genetic data on
next steps cohort members for the first
time and I'll come back to this later
on.
um BCS most recent BCS70
sweep. These data have been available
since last year. Again, a similar sort
of um profile of information in terms of
the health data across general and
specific health conditions, health
behaviors and some more kind of um age
age specific measures. Thinking a bit
about uh about menopause and fertility
here.
The NCDS data again they've been
available since last year or the survey
data at least. So this um slide is
looking at the survey data. In the next
slide we've got some separate biomedical
data that were collected at a health
visit. Again similar sort of profile of
of variables here with some age specific
um differences.
Uh we had here a specific biomedical
data collection from a a health visit.
So we can see there's um a variety of
different uh variables on the left hand
side. information collected from a nur
nurse visit. Again, there were bloods
taken here and analyzed. So, we've got a
number of biomarkers that you can see
there listed on the right hand side. Um,
there have been similar um biomedical
sweeps, one earlier in NCDS when they
were in their mid-40s and one at a
similar age in BCS70, which means that
we can do some nice kind of longitudinal
biomarker analyses in NCDS and some
crosscohort work too.
um the biomarkers collected in in those
different sweeps are um fairly similar
but here the um metabolomics is a novel
addition at this sweep. MCSH23 data only
become available early this year. Again
very rich data lots of different um
health uh variables that you might be
interested in uh with a few more age
specific uh details there.
So now we got on to the actual linkages.
So um this is broken down by country in
the first column because the the data
are often available only on that basis.
So in England we have hospital episode
statistics available for all four of the
studies that I'm talking about here. So
that includes um admissions into NHS
hospitals, outpatient visits and A&E
attendances.
Um so at the moment you can access all
those data at UKDS. um that that will be
transferring to UK LLC, the UK
longitudinal linkage collaboration from
that point onwards. And there's already
some other health data, administrative
health data that are available at UK
LLC. So, I'm not sure if anyone's
mentioned this yet, but UK LLC is a
recent um collaboration and initiative
um that's been used by UK longitudinal
studies uh to help enact administrative
data linkages. Until recently, it's only
been available for COVID research, but
this is now being opened out. So, it's
become going to become a very rich data
resource for the analysis of linked uh
administrative data. Uh in Scotland, we
have linked health data, linked health
administrative data for MCS, NCDS, and
BCS70. You'll note there's no next steps
here because it's England only. Uh
there's a variety of different health
records that are linked which depends a
bit uh on which study we're talking
about and these are all available from
UKDS. In Wales we only have linked
health admin data for MCS. Um but the
data that we do have are quite rich
across a number of different admin
sources and these are available either
at the sale data bank which is based in
Wales or UK LLC or uh UKDS as well.
um genetic data. So all of the um four
core CLS studies that I've been talking
about now have genetic data available.
As I say, that's only recently been the
case for next steps. These [snorts] are
free for researchers to access. If you
want to get hold of the raw genetic
data, big data files, then you can do so
by an application to our data access
committee. But [snorts] the major advent
recently in terms of the genetic genetic
data is the derivation and deposit of uh
polygenic scores um across all of these
four core studies for a number of
different health and social phenotypes
and these are all available from UKDS
and this gives you more you know genetic
data in a more manageable format for the
I guess the the non-expert potential
user of genetic data. Uh we've recently
published a genomic data cohort profile
in the international journal of
epidemiology and there's a link on the
left hand side there for our website
which covers all of this in lots of
detail. Um and as you can imagine
there's some selection into who provides
genetic data in our cohorts due to
attrition and people not providing blood
samples and we're in the process of uh
deriving some weights which can be used
to uh rewe the sample with genetic data
back to the original cohort.
Um and finally, just moving on from
those four core um cohorts that I've
been talking about so far, um very
exciting recent news at CLS is that
we've been funded um to set up and run
for the first um two waves of data
collection, the first UKwide birth
cohort study in 25 years, which will be
called Generation New Era. We're aiming
to follow the lives of around 30,000
children who will be born throughout
this year and their families. and the
scientific focus is really on thinking
about uh inequalities in in development
and how you know subsequently that plays
out throughout life. Um it be a
nationally representative sample across
the UK, boosts for ethnic minorities in
England and Scotland, boost for
low-income areas across all four nations
and larger samples in the devolved
nations relative to England. data
collection starting at the end of this
or towards the end of this year, but
we're in a pilot phase of data
collection at the moment. So, we're
already very busy with this. Thank you
very much.
>> Excellent. Very much. Any
>> any questions you have for him? Daniel,
please put them in the Q&A. Richard,
sorry, can you maybe mute yourself
because I think it's creating an echo as
well. Thank you. Excellent. Okay, so we
are moving now on to understanding
society and we have Jack Nishaw from
University of Essex telling us about
recent developments. So Jack is the
executive director for understanding
society and leads on his data linkage
activity. He has over 20 years of
experience working on the managing a
wide range of national and international
social science data infrastructure
projects, services and tools. So handing
over to you Jack.
>> Thank you uh Mari. Uh so I have a
broadly similar set of slides to Richard
and and thankfully he's introduced some
of the topics and and concepts I was
going to talk about. Um understanding
society uh sponsored by the uh economic
and social research council undertaken
at the run by the University of of
Essics uh where I'm based. Oops. Ah
is my is it moving forwards at all? No.
Oh okay. Um I have three or four slides
where I just want to talk through what
the study is and then I'll talk about
three or four slides where I talk about
the recent data linkages and the uh and
the things that can be done with that.
Uh UK household longitudinal study um is
a a household panel survey. Um we follow
uh households annually. We have a um a
questionnaire that's that's delivered
annually. We also collect um we ask our
respondents for consent to to make
linkages and I'll talk about those
later. And we also collect um from time
to time bio samples and collect many of
the kind of same analytes and genetic
and epigenetic data that uh that Richard
was talking about. Um
we have various samples. The main study
has been running since 2009. Um but we
include if those of you might remember
the BHPS. The BHPS is a sample that
continues through the study. We have
data for both participants right back to
1991.
Um, and we have boosts for the uh
constituent nations. So there's a
Scottish boost, a Welsh boost and a
Northern Irish boost which allows you to
um anal analyze those countries um on
their own with a sufficient number. And
we also have an ethnic minority boost
and a further immigrant and ethnic
minority boost that allows you to um
conduct analysis on um ethnic groups
which are powered to a uh because we
have a a larger end for those.
We're a multi-topic multi-purpose study.
So not not a health survey as such. We
collect information on a wide range of
areas. So uh listed there, education,
employment, family and household and
income, wealth and expenditure as well
as health and well-being. We collect
information on participants statuses,
their behaviors, their attitudes, belief
and expectations. And the idea is that
this provides a kind of rich um
contextual information that you can use
if you're if you want to study the um
the health data. you you can understand
how that fits into the household, the
family behavior, people's um labor
market statuses um and partnerships and
and histories like that.
In terms of health, um we have a a
health and well-being module that's
covered each year. We have a a range of
of kind of standard modules. So there's
the we have the GHQ12, the Warrick and
Edinburgh mental and health well-being
uh scale, the SF12,
uh the CAGE alcohol consumption um SDQ
for measuring children's mental health
and as I mentioned we um from time to
time have a a biocolction wave. We've
got one happening right now in wave 16
though will make the data available for
that early next year. Um but we have a
wave two uh and three biocolction which
is now about 10 15 years old where we've
taken a uh measured a range of blood
analytes similar to the ones that
Richard had listed um and also taken
genetic and epigenetic data from DNA
from uh those studies. Uh as with the
cohorts, we also had a COVID uh s uh
survey data that ran um study that ran
between uh April 2020 and September 2021
um which you can you can use to kind of
cover people's um health and well-being
in uh in the COVID uh pandemic times.
But to focus on the on the linked NHS
records um so Richard explained what the
LLC was. Um it's a place where now many
longitudinal studies are putting their
data to allow them to be linked to NHS
records. Um I don't need to say that it
was born in the COVID times because
Richard mentioned that um but initially
um and right now the people who we've
got there who you can link are those who
consented in the uh COVID survey about 8
and a half thousand participants. Um but
we're excited that from this summer
we're able to link uh a huge uh number
more. So we have people who consented at
wave 1, four and 16 of our uh uh study.
Um they're now able to be linked to the
NHS records which will take the end up
to about 38K. So there's uh
substantially more uh numbers that you
can uh analyze and we're also adding the
nurse visit data. So all those um blood
analytes and biomeasures from wave two
and three will also be added to the
resource LLC. Um this is just a slide
that gives you um a list of the linked
data. Many of you who uh analyze NHS
records will be aware of uh many of
these data sets. All of these are
currently linked for uh England only.
Um, but the Welsh and Scottish uh
linkages I think are working their way
through the system and you should be
able to um analyze Welsh and Scottish
participants alongside English ones with
their uh health records later in 2026.
Um so just briefly what this means so
that hard outcomes that you get from NHS
records, the hospital visits, the cancer
registrations, death, all that coded
information um can now be linked with
the wider survey responses. So that give
you the the context of their individual
family, labor market, um education, all
that kind of rich information that um is
not contained in the in kind of the
administrative records is there to be
analyzed alongside the um the harder the
coded stuff. Um, the other thing that I
think is worth saying that's quite
exciting is the first time at the LLC,
you'll be able to link not just um, NHS
records with the survey responses, but
there linking the DWP and HMRC data and
I think later on the national pupil
database data. So you ought to be able
to very soon um not just have the survey
responses and the bio measures but also
the NHS records also track pe the same
people through their benefits history um
HMRC income data and education data. So
it's we're kind of a a cusp of a really
exciting time. Um so you know hopefully
people will be able to get their hands
on these all these data in the second
half of 2026.
Um this is my final slide. I'm think I'm
just about on time. Um, didn't want to
just talk about the LLC. I'm at a UK
data service conference. So, these
linkages are ones from Understanding
Society that are available by the UK
data service secure lab. Um, we've
linked um consenters to their credit
histories. So, we've got data from
credit reference agencies um linking
their personal finance, their mortgage
um payment histories, their credit card
debts, whether they've taken out
emergency payday loans. Um we have a
month monthly credit history data um and
people are already using that to kind of
link um debt to mental health. Um we've
got a project currently done by someone
looking at the personal finance of of
people who are carers. Um so there's a
rich sort of seam of of data there.
We've also linked to Nest autoenrollment
pension histories and again I think
that's a a monthly data set. Um and so
you can look again there people are
looking at people's pension wealth um
and those who don't have pensions um and
comparing it and looking at you know
their health trajectories through um we
have property level data at the moment
it's on a on a smaller study that we
call the innovation panel um but we're
linking energy performance certificates
we've got smart um energy data we've got
some data on air quality sensors and
again all this kind of information can
be used to to answer um questions in
health research. Um the first two are
already available by the UK data service
secure lab. Um the third one is on its
way to the UK data service um in the
next couple of months. Um and that's my
final slide. I've not been timing, but
I'm hoping that's kept fairly close.
>> That's excellent. You actually made up
the time that you started late for.
Thank you very much. really exciting ter
developments for understanding society
and data linkage. So I think we have
some questions related to this as well
later. Okay. But we are moving on. So um
we now will hear from Steven Yash from
University College London telling us
about UK census longitudinal studies. Uh
so Steven is professor of uh
quantitative social science at UCR
Institute of Epidemiology and Healthcare
and is director of economic and social
research council funded center for
longitudinal study information and user
support. So I'm going to hand over to
you Stephen.
There you go. Brilliant. Can you see
that Mari?
>> All good.
>> Fantastic. Yeah, I managed to share the
slides but then forgot to unmute myself
and which I actually found quite
difficult to do after I done the share.
Anyhow, here now. Um, thank you Mari for
the introduction. Um so as Mar says my
name is Steven Chibraj and I um lead a
ESRC funded investment um which is sort
of broadly known as Celsius and as Mari
said we um essentially provide um user
support and access to something called
the ONS longitudinal study um which is
part of a consortium of three census
based longitudinal studies. So they
include the Scottish longitudinal study,
the Northern Ireland longitudinal study
and uh the study that we support, the
ONS longitudinal study. And so um we
come together under the banner of this
um title, UK census longitudinal
studies. Um if everything I've already
said to you already um is completely old
hat, then you can probably spend the
next sort of 5 10 minutes checking your
email. But if it's not and you're not
aware of these things called censusbased
longitudinal studies, I'd really
appreciate your attention cuz I think
these these data could be potentially
really useful if you're someone who does
research or is involved in commissioning
research on the sort of broad area of um
population health.
So uh first question I guess you have if
you haven't heard of these is what are
they? What are these census based
longitudinal studies? Well um clues in
the title they are all census based. So
they are linked individual records from
the census in the case of the England
and Wales data going back to 1971 in
case of the northern Irish data going
back to 81 and the case of the Scottish
data going back to 1991. And so these
records from the census are linked over
time giving you a longitudinal history
of a sample of people. Now what the real
great thing about these data are which
um are very much in contrast to the um
co-op studies and the um uh
understanding society data that we've
just looked at is the beauty of these
data is that they are incredibly large
in size. So in the case of the ONS
longitudinal study for example, it's a
1% sample of people who submitted a
census return in any given census. So
we're talking here of more than half a
million people in any given census. And
as I said, those records are linked over
time. In the case of the Northern Irish
and the Scottish data, they also have
incredibly large samples. In fact,
proportionally greater than the England
and Wales data in that in Northern
Ireland, it's about a 28% sample. And in
Scotland, it's just over a um 5% sample.
>> [snorts]
>> Now, we don't have anything like the
depth of information that's in the
cohort studies or in understanding
society. In fact, um if you're aware of
census measures on health, um they are
pretty limited to things about um
long-term limiting illness and
self-rated health. But we do have linked
data which I'll describe in in the next
slide in terms of looking at measures of
health. But it is fair to say these data
are are nowhere near um provide us
in-depth information. But as I said,
what they do provide is that really
large sample size. So if you're
interested in looking at
underrepresented groups in society, so
let's say you're interested in
particular ethnic groups, maybe you're
interested in people who provide unpaid
caring, who are very underrepresented in
society, then these census based
longitudinal studies are really useful
because we have sufficient sample sizes
with which to look at those groups and
look at what's happened to those people
um over time. should the census measures
have been collected um for uh for long
enough.
And also another aspect of these studies
is we don't suffer from the same type of
attrition as other studies in that the
way people are um um put into these
censusbased studies is by taking uh
random birth dates across the year which
are not known to um to myself and in
fact are only known to a small number of
people in each of the constituent
statistical agencies in uh different
parts of the UK. Um and I'll talk about
why that matters in terms of data access
um in a couple of slides time. But um
the way in which people are included is
if they have a birth date on one of
these random uh dates, their census
record is taken. And so in effect, what
happens here is nobody knows other than
those very small number of people who
know what the birth dates are. Very very
few of the people that are in the study
actually know they're part of it. Um and
no one knows if they're not part of it
unless they know what the birth dates
are.
Um in terms of data linkage there is a
whole host of data linkage across the
three studies. Uh the core information
that's available universally across all
three. Uh the primary thing is vital
registrations and vital registrations
are used to provide data to researchers
but actually also are really important
in terms of maintaining the cohort. So
the critical thing here for researchers
and cohort maintenance is whether a
member who is part of the longitudinal
studies if they are known to have died
then we don't need to retrieve their
census records in in later time periods.
So that helps with the cohort
maintenance but also uh mortality data
is provided in this data set for
researchers to analyze both or cause
mortality and cause specific mortality
and historically those data have been
available annually since co there's been
a bit of a hiatus in terms of the
availability of those but generally they
are certainly up to date as of the
latest census if not updated more
regularly than that. Also um each of the
studies has various health service
information. So um across all three
studies there are there's information on
cancer registration um but in the
Northern Irish and the Scottish data
there's a whole host of other um health
service information things like hospital
episode statistics prescribing data um
but those data aren't available in the
England and Wales data at the moment.
also weather information which perhaps
may be not interested to health
researchers as outcomes but potentially
as exposures of predictors of health. So
education data is available both in the
Northern Irish and the Scottish data and
there is also weather and pollution data
uh which has led to some really
innovative research both in the Northern
Irish and the Scottish data and
specifically in relation to the northern
and Irish data there's also land and
property service information. Just one
thing I forgot to say in relation to the
vital registrations. Um the uh members
that are part of the um longitudinal
studies if they are known to have a
birth that information is also recorded
in the uh in the data.
Now this is the hardest part of the cell
of this data which is data access which
is much more incredibly difficult
compared with um your sort of standard
enduser license um data set that might
be available on the UK data service
which you'd only need to um have a UKDS
account create a project and then
probably sort of within the hour have
your data downloaded the access to these
longitudinal studies um are are much
more um um involved um in that they
require an application to use the data
and they also require users to obtain
ONS accreditated researcher status um
which is it like I say it it it it it
does require something a bit more but
then um as I hope I'm trying to convince
you it provides you access to a data set
which has its um its own um unique
selling points um but for each of the
studies there is um quite substantial
investment from the SRC which we're very
appreciative of which enables us to help
researchers throughout the whole project
life cycle. So we recognize that
accessing these data are difficult. So
what we recommend to potential users is
that they contact the support users in
the first instance when they're
interested in using these data. And once
you make that contact, if you do want to
submit an application and ultimately
also obtain accreditated researcher
status, each of the support units will
guide you through that process and help
you. And ultimately, when it comes to
your project being approved, what will
then happen is each of the support units
for the constituent data that you've
applied to will create a bespoke data
set for you. So again, unlike data that
you might download for the 1958 birth
cohort from UKDS, which will be the same
data set that everyone downloads for the
sort of standard data. In the case of
the longitudinal studies, every data set
that a user um has is bespoke in that we
only provide access to the variables
that people um request rather than
access to the uh the full data set.
I should say that for anyone who's
interested in doing research on
individual census based records but
doesn't require any longitudinal linkage
over time or access to the data linkages
that I've described on the previous
slide. There is data available on the UK
data service um um repository. Um in
fact some of the most um least
confidential data is actually available
open access and the more confidential
data with uh more detailed um variables
and also larger samples is also
available through the various um access
um requirements on on UKDS. So if you
are interested in using individual
census based records then don't think
that the um longitudinal studies are the
only place in which to um to obtain
those.
Um final thing is just to uh flag up um
where to look out for support for these
data. So if you're interested in using
one of the uh constituent data sets then
uh these are the websites of the three
support units. So, as I said, if you're
interested in using these data, I'd
strongly encourage you to reach out to
one of the support units, again, if
perhaps you're not a researcher
yourself, but you're interested in
commissioning data or commissioning
research, sorry, um, but and you think
these data might be useful for that that
commission, then again, feel free either
to encourage your researchers to to
reach out to us or again, contact us
directly. But if you go to any of those
links, you'll find lots of information
about the data and how to contact us and
ultimately submit a project application.
Thank you.
>> Thank you very much, Stephen. And very
very powerful interesting data source
there. So I hope people to uh to take
time to to get access to it for their
research and dies very nicely as well to
our next presentation and final one in
this session uh which is by Esther Larry
from Queens University of Belfast and uh
speaking about nils that was just
mentioned um and uh the linkage with
Northern Ireland maternity services
system. So Estelle is a director of the
Northern Ireland Longitudinal Study and
a senior research fellow in the school
of natural and built environment at
Queens University of Belfast. She's a
health geographer specializing in health
inequalities and life course modeling.
All right, so I'm going to hand over to
Esta.
>> Yeah, thank you. Um, so this actually
leads on then quite nicely from uh
Steven's talk. Um, because I'm the I
work on the Northern Ireland
longitudinal study. So this is almost
then like a case study of use and of the
kind of things that you can do with um
our data and the kind of things you can
explore when you add on different
linkages.
Um yeah, so I'm going to talk a little
bit about maternity research and how we
can use the Northern Ireland
longitudinal study to do kind of like to
look at maternal um and child health. Um
so I'll talk a little bit about the kind
of objectives of this study and how it
came about. Um I'll touch on the data
although I think Steven has covered uh
most of it. Um but I'll just talk about
the kind of the added value that that
linkage to the maternity services system
has brought us and then I'll give a few
preliminary results um although I'll not
focus too heavily on these as um we're
here more to think about what the data
can do or what you can find out from the
data.
Um so just to give a little bit of a
background then on this study. Um
despite a decrease in the birth in the
number of births in Northern Ireland, we
found that the sociodemographic profile
of women giving birth was actually
changing and that was bringing um more
complications
uh and the actual needs of women giving
birth were changing. So it's really
important to consider this in the level
of demand on the maternity and the
health services that it's not just about
the number but the the types of births
too. Um the latest kind of figures in
Northern Ireland at that time showed us
that over half of women entering
pregnancy were now overweight or obese.
So that was from 202122
when we started the process to this new
linkage. Um so that showed that almost
60% of women um were entering pregnancy
with a higher BMI
and we know that increased BMI during
pregnancy can be linked to a number of
short and long-term complications to
both the mother and the offspring. So um
it was really important to kind of
address these uh in terms of
complications it can be it can increase
the risk of still birth um it can
increase delivery risks um and it can
also increase the risk of obesity to the
child in the longer term as well as
metabolic um abnormalities and and many
other uh complications.
And as well as that then it also places
a significant burden on what is an
already stretched health system. So it
was um an important topic to kind of
look at.
Um our objectives then were were sort of
twofold. The first and kind of primary
objective of this was to really um test
the linkage. Um so it was piloting this
new pathway of linking the Northern
Ireland longitudinal study and the
Northern Ireland maternity system. Um so
this really provides like an ideal and
unique combination of socioeconomic and
clinical data to allow um us to explore
the most socioeconomic determinance of
maternal obesity because we all know
that administrative data brings us such
a wealth of information and of
knowledge. Um and as Steven said our
studies are are really large sample
size. So it does let you see um kind of
under under represented grips. Um but
sometimes the actual real value uh comes
when we link data sets and we can um
maybe see some hidden insights when we
link things in different ways.
Um in terms of the actual research
objectives then this pilot study was
aiming to to firstly just explore the
demographic, social and economic
determinance of maternal obesity or
maternal overweight.
Secondly, to really kind of um give
something novel and something which
isn't looked at a lot is we could
identify a subop of women with more than
one pregnancy. And we could actually
look at this um interim period termed
the inter pregnancy period and look and
see whether women are losing weight,
gaining weight or remaining the same
between their pregnancies. um and then
to look at some determinants of those
kind of weight changes and see if they
were different from those who maintained
a normal weight. I'll probably just take
you through the very um high level
results uh in a moment, but if you are
interested in any of those objectives,
please do reach out. Um so, as Steven
said, he talked a lot about the kind of
the core data that we have available
within the UK census longitudinal
studies. So I'll maybe just touch on
what um Northern Ireland has that's
maybe a little bit different in our
census in Northern Ireland. I guess the
thing to highlight is the health
questions. Um so we actually have uh a
higher number of health related
questions. Um I think there's 11 of them
at 2021. We had a bit less at the 2011.
Um but they will ask about very specific
conditions as well. So we have um you
know problems with vision, problems with
hearing, breathing difficulties um and
we have a a whole range of kind of
questions about specific conditions. We
also have the Northern Ireland mortality
study which is like a sister study to
the nils and that includes 100% of um
those enumerated at a specific census
time and any subsequent mortality uh
linked on to that. So it um just gives a
better way of looking at if your study
is focused on mortality or cause of
mortality.
Um and then again we wanted to link this
with the sort of the clinical
information all the things we can get
from the maternity notes. So this was
before uh they moved to encompass. So it
was all from um I'm not sure if in other
parts of the UK you have the green
folder but this was like the green
maternity notes in Northern Ireland.
Um and the way we designed it, so you
see we're not using the latest census.
Uh but we do have that available. It was
just this study came before that that
was available. So we took kind of
demographic, socioeconomic, household
and area level information um because
it's also geographical studies or
spatial analysis is um really good to do
with these kind of UK census
longitudinal studies. And then from the
maternity notes, we took things like the
number and the timing of the birth, any
pregnancy complications, gestational
age, birth weight, and maternal BMI.
Um, so this first slide of results is
just really showing like what could we
actually track from using this data set.
Um, so we took I forgot to say, but we
took the 2011 census information and we
linked that right up to I think it went
to midway through 2019 at the time of
the maternity notes. Um, so we were able
to get 40 just over 44,000 pregnancies
and that was to um just slightly over
31,000 mothers spanning that kind of
8-year period. And you see I've got in
orange um is the whole Northern Ireland
trends and uh you can see they're very
slightly decreasing year on year and
that is Mered in the the Niels members
or the Niels pregnancies only a very
slight decrease over the years. So just
um kind of a way of checking that we are
catching things which are representative
of the total trends and also then
looking at the parity of the mother when
she first appears in the data set. So,
we had um the majority were um the
mother was appearing for the first time
or for the first baby. We had about
8,000 appearing for the first time with
her second baby. Um and then slightly
less as it went on. And we've just
rounded up. The yellow bar shows fourth
and subsequent babies.
Um and again just looking at the risk
profile of pregnancy. So some highle
results then. um things which probably
will not come as a shock but is nice to
see that these trends are kind of
duplicated in our data as well. So there
is a shift in the age profile of
mothers. Um so we use the first year
available which was the blue line 2011.
The last year is the gray line of 2019
and the orange we took a mid which is uh
2015 and we can see that there is this
shift um and the mean age changed from
28.7 to 30.1 um in just those 8 years
and the clustered bar chart here is
showing our obesity and overweight
trends. So the blue um is the normal
weight and you can see we're seeing a a
decrease here in those who are normal
weight going into pregnancy by 2019 and
the black is the obese um box and again
you can see this upward trend.
Um also then I wanted to show this um I
know it is a lot of numbers but I'll
just talk through it just because this
is uh one of the more novel things that
you can actually get with this specific
data linkage. Um so it's these inter
pregnancy periods so between pregnancy 1
and two between two and three etc. And
um although we have many smaller numbers
coming up to that final interpreg
period, the numbers for the rest are
pretty robust and will allow some good
analysis. Um so we have like almost
8,000 and then almost 4,000 for the
first two interpreg periods. um you can
see the kind of the mean duration um is
slightly decreasing over time and the
the inter pregnancy period one so
between pregnancies one and two um we're
seeing the highest weight gain. We also
linked this in with deprivation measures
and it was interesting to see kind of uh
how people in certain areas or um the
the trends of weight gain in those
areas.
So the next steps then are really to
identify whether the social and
demographic determinance of interpreg
weight change are different from those
who have maintained normal weight. So
going back to the actual research and
also then to use this data linkage
pathway now that we have it more
streamline for further research which
might inform the new um Northern Ireland
maternity strategy. And just to
acknowledge then the um staff in the
research support unit for really helping
out with this linkage and pushing it
forward. um and to my co-authors um Neil
Roland as well. So, thank you