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good afternoon everyone and thank you
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for coming to hear about understanding
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Society I'm gonna kind of whisk through
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quite a lot of things about how
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understanding Society can be used for
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research on uh biomedical research
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um I've got lots of web pages and things
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as I go on my slides so um if you don't
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manage to pick them up now as uh Emma
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said they will be made available
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um later
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so understanding Society
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is so I'll just get rid of this thing
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about this but understanding Society is
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a multi-purpose household panel survey
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which began in 2009 and it has a small
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kind of replica study if you like called
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The Innovation panel where we do lots of
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experimenting and I'll say more about
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that later it builds on a very
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long-standing study called the British
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household panel study which began in
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1991
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um so there's a kind of a long history
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here
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at the first wave of understanding
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Society our Target was to get 40 000
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households which is about a hundred
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thousand people and again I'll say a bit
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more in a minute about the kind of
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different samples that make up uh the
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understanding Society study
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understanding Society has a sequential
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mix mode field work design and again
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based on Research with our Innovation
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panel we decided to go down this road so
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people who invite from the Seventh Wave
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of the study people are invited to take
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part either web or face to face and if
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they don't accept that after a few weeks
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then they're offered the other and then
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if they don't do either of those we try
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to contact them by telephone and and
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this is a kind of good way of capturing
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lots of people who want to do things in
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different ways but it also fortuitously
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meant that during the pandemic we had no
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disruption in our field work we kept
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going because we just dropped face to
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face and continued with web or telephone
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understanding societies are publicly
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available data set I'll say more about
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how you access it later but there's a
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lot of people download it mainly
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academics and it's used internationally
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and if you're interested in comparative
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research it's part of a family of
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international Health household surveys
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that are conducted in a range of
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different countries and there's a
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harmonization project uh called cnaf
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which is on the screen and hence you
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could look at further if you're
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interested in comparative research
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so understanding Society is a panel
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study which is a bit different to a lot
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of the studies in closer which are
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cohort studies so understanding Society
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is based on probability of sample of
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postcodes which enables us to kind of
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provide representative data of the UK
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households and it follows people of all
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ages so because we interview people each
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year we interview parents before
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children are born then we kind of ask
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dates ask questions about the children
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from age zero
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when people attend we start asking them
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questions themselves and we have members
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of our panel who are over 100. there's a
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lot of some sizes I I mentioned so that
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enables subgroup analyzes so for example
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we have 500 births a year we have kind
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of um
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10 000 people per birth decade cohort so
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there's kind of lots of different ways
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you can cut the study up to do different
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analyzes we are in the field all the
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time so every person is interviewed
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annually but each wave takes two years
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so they overlap but what that means is
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people do research with understanding
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Society for example that looks at the
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weather because they can track daily
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weather and map it to the answers that
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people give
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again I'll say a little bit more about
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this in a second but we cover multiple
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domains so I kind of think the strength
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of understanding Society is being able
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to do research that links different
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aspects of people's lives I think
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as with many multi-purpose surveys
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anyone with a real specialist
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um focus to their research will get
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frustrated but we have only a few
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questions on that topic so the value is
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in being able to combine it with other
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subjects
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um the whole household is interviewed so
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you can kind of look at how couples
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relate to each other in their answers or
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parents and children and then over time
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as people have grown up and moved out it
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means we have multiple Generations both
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within and across households so you can
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look at that intergenerational aspect of
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family life
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there's a natural refreshment to the
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study so as households change people are
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born people will move in together those
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new people new household members become
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members of the study as kids leave home
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we follow them as well as staying uh
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with the kind of original household they
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started in so there's a kind of natural
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Dynamic to the study in the same way as
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there's a dynamic uh to people's
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household lives and we ask consent for
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data linkage we have a lot of different
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Geographic identifiers and most of our
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data is at the UK data service again
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I'll say more about this and we provide
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a lot of support to users around both
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how to use the data and how to promote
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policy impact from it
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so I think there were six aspects of
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understanding society that are useful
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for biomedical research there's the main
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panel survey in which when we deposit
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the next wave in November will mean
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there are 29 waves of bhps and 12 ways
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of understanding Society
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secondly at waves two to three and now
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funded for wave 16 we did a biomarker
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data collection and I'll say them all
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about that in a minute uh we did a covid
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survey
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um kind of monthly through 2020 and 2021
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we have data linkage linked to NHS data
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we have an innovation panel where we do
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experiments where we have done quite a
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lot of experiments about how to collect
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biomarker data and we have genetics and
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epigenetics data available so I'm going
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to just briefly run through very briefly
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looking at the time and these six
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different data streams that might be
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useful for the research you do
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so the main survey has a number of
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different samples it has the general
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population so
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I'm sorry which is uh representative of
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UK households but then we boosted ethnic
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minorities so at wave one we boosted the
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five main ethnic groups in the UK and
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then at wave six uh we did a second
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booth for the Immigrant and ethnic
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minority where we reboosted those groups
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and added new immigrants who had moved
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to the UK since 2009 and as I mentioned
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earlier we've Incorporated the British
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household panel study so as an annual
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survey we have year-on-year response
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rates around 1995 for the general
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population sample and the ethnic and the
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bhps and about 75 to 85 for the two
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immigrant uh and ethnic minority boost
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samples during the pandemic we lost one
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or two percent to those numbers as we
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weren't able to do face-to-face
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interviewing but we're now returning to
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face to face so we hope to be able to
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kind of push that back up and we're
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currently in the field with a new Boost
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sample of the general population to kind
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of add to our numbers again these data
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are at the data archive and that's the
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study number and there's a big set of
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information about it on our website
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so it's I've got to slide in a second on
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the health data that we have but this is
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just to give you a sense of some of the
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other kinds of data that and your
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understanding Society collects so every
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year we ask people the same questions
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about kind of changes in their household
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or their employment or their partnership
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or where they live or their job uh how
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that's changed from the previous year
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about their income transport consumption
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all sorts of things then we have a set
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of rotating modules where we kind of
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seek and consult with our user
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communities about what's important and
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these rotates are on a couple of wave
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cycle so we've just refreshed our
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environmental Behavior questions that
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will go into the field next year we have
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a whole set of questions about political
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engagement we just released a special
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data set on that so there's a whole set
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of topics that you could link to health
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for biomedical research
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we ask a set of initial conditions when
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people first join a survey whether
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that's a wave one or because they've
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moved into an understanding Society
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household around their childhood and
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their migration and their histories
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around employment and partnership and
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facility
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uh all those things I just mentioned are
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in the adult questionnaire but we also
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have a youth questionnaire where we
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start asking people questions at age 10
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about their family life their behaviors
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things that happen at school friendships
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about their attitude political attitudes
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and their aspirations and expectations
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for the future
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in terms of health we kind of have a
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range of domains of health questions
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some of which are part of our core
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questionnaire so uh kind of global
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measures of Health Doctor diagnosis of
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specific conditions various scales like
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the sf12 or GHQ activities of daily
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living that are asked regularly and then
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on a rotating basis we have things like
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measures of well-being and use of Health
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Care very detailed questions about use
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of social care and who gives people
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support for social care and a range of
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questions about health behaviors and
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measures of sleep Pittsburgh's sleep
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questionnaire we did a quite a big
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cognition questionnaire at wave three
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and again we're repeating that again at
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wave 16.
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for 15 to 21 year olds as well as these
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quests getting these questions they also
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get uh kind of extra questions about
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smoking and drinking and illegal drug
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use which map onto the questions where
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they were asked when they were 10 to 15
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around those sorts of Health behaviors
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but
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15 year olds we are some general
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questions about their health we asked
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the sdq and we asked things measures of
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self-esteem and and life satisfaction
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under 10 we identify what we call the
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responsible adult generally the mother
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who asks a range of questions answers a
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range of questions about their children
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at specific ages around development
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stages sdq
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then when um a woman tells us she's
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pregnant we ask about how the baby was
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conceived and about delivery any
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complications we ask about the mother's
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behavior during pregnancy for example
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smoking and drinking and then we ask a
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set of questions around kind of early
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life like birth wage gestation
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breastfeeding and things like that
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so that was the worst
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the whistle of the
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survey moving on to the biomarker data
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collection so at waves two and three uh
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the main interview was followed up by a
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nurse visit and about 20 000 people had
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this interview they were asked a range
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of questions about their health on that
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day and then the nurse took on physical
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measures pretty standard things height
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weight waste body fat blood pressure
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lung function and grip strength
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they took a blood sample at the time
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which was frozen because they didn't
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have funds to do anything with it but
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we've since analyzed it for 21 analytes
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where we have about 13 and a half
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thousand people with these data things
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like cholesterol hba1c different
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measures of inflammation and anemia
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liver and kidney function and some
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hormones
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this week oh this month rather this week
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the data is going to the data archive so
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it will be available to you uh in about
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a month's time we've added a proteomics
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panel of 140 184 proteins based on an
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o-link cardiometabolic a neurology panel
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and that's on about 6 000 people we're
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also adding to the data some epigenetic
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clocks that users have produced in some
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polygenetic risk scores I'll say a
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little bit more about that in a second
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um but but basically we're adding all
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that to the data set and then we also
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have another set of analytes we're
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hoping to add by the end of the year
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including things like apoe
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so the third data stream I wanted to
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mention was our covid survey so we
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started this in April 2020 when
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everybody who'd Taken part in the
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previous main wave was invited to a web
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survey we consulted on questions and we
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ended up with a core set of questions
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around people's experience of covid
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whether they'd been ill whether they'd
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kind of been contacted by track and
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Trace vaccines all those sorts of things
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as well as their employment whether they
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were furloughed and working at home
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their finances during this period their
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experience of homeschooling children and
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their mental health and then there was a
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whole set of rotating modules kind of
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related to what we carry in the main
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survey caring social networks contact
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with family all sorts of things so that
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you could look at how people's lives or
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how yeah how people experienced their
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lives during the pandemic compared to
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their lives before and now afterwards so
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we did web surveys every month in 2020
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pretty much and then quarterly in 2020
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one we did a telephone survey a couple
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of times and with people who weren't
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regular web users and in March 2021
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along with a whole range of other
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longitudinal studies we added an antigen
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test and consent to linkage to the NHS
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so these data are also available at the
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data archive
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so in terms of data linkage we have like
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many other longitudinal studies been
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asking for consent to link to a range of
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admining data sets and we're currently
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at wave 12 we've been talking to some of
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these data owners since wave one to try
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and get linkage it's um
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it's the thorn in all our sides but
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anyway we have linkage for MPD and uh
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vehicle details dbla linkage is already
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available and by the end of this year we
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should have linked credit histories and
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uh pension information and we think
00:14:09
Welsh and Scottish Health Data and next
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year we're reasonably confident that you
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can never kind of be totally confident
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until it's there that we will have need
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data which is the Energy Efficiency of
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households Twitter data and linkage to
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people's um businesses well the
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businesses they work for as employers
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and there's more information about that
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on our website again like many of the
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other longitudinal surveys during our
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Kobe survey we requested consent from
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our participants to link to their health
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data and those data are linked now for
00:14:44
covid-19 research only on the UK
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longitudinal linkage collaboration
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trusted research environment and so you
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can and get linked understanding society
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and NHS data if you have a research
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question that's relevant to covid as I
00:15:01
understand it
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um they are trying to broaden that remit
00:15:05
at the moment so that will hopefully
00:15:07
that provider that you can only do
00:15:09
research will
00:15:11
um be gone soon so you can do it for any
00:15:13
research questions that interest you
00:15:16
where you would want linked data
00:15:20
so I mentioned that we have an
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innovation panel this is our fifth data
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stream that might be useful to you so
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the Innovation panel is a small version
00:15:27
of understanding Society where we carry
00:15:29
out methodological testing and
00:15:32
experiments it's run each year it
00:15:35
carries our core questions and then
00:15:37
methodological testing that we need to
00:15:39
do for our main survey but we also have
00:15:42
an open competition that's launched
00:15:43
every February for
00:15:46
um users or per people to put forward
00:15:48
experiments that they would like carried
00:15:51
out so there have been quite a few
00:15:53
different experiments in the past about
00:15:55
the wording of different health
00:15:57
questions and how people respond to that
00:15:59
and as I mentioned earlier we had a full
00:16:03
wave which I the next slide's about
00:16:05
where we got people to collect
00:16:07
biological biological samples for
00:16:09
themselves other things that might be
00:16:11
interested is in ip13 which is available
00:16:14
now we um ask people to download and use
00:16:17
a well-being app ip15 is currently in
00:16:20
the field and we're doing some more
00:16:22
self-measurement where we're getting
00:16:23
people to measure their waist and hips
00:16:25
themselves by sending them a tape
00:16:27
measure and they're also using a body
00:16:29
shape app so they take a selfie of
00:16:31
themselves which is just a outline and
00:16:34
then from that an algorithm calculates
00:16:37
uh the wrist and hip and other
00:16:40
measurements they're then interviewed so
00:16:43
that we can check how well this body
00:16:46
shape app manages to do that
00:16:48
and then at ip16 we're planning to ask
00:16:51
people to input data from the red book
00:16:54
on Child Development I and both kind of
00:16:56
do it in a way when they photograph it
00:16:58
or download data or they just type in a
00:17:01
few numbers to see which they're more
00:17:02
willing to do
00:17:05
so ip12 and these data in the data
00:17:08
archive so you could do
00:17:10
um experiments with this studying
00:17:12
experiments you could look at these
00:17:13
experiments and re-analyze them
00:17:14
yourselves if you're interested we
00:17:17
randomly allocated people to three arms
00:17:19
one where they were interviewed by a
00:17:21
nurse one where they were interviewed by
00:17:22
an interviewer and one where they only
00:17:24
took part online and we were interested
00:17:27
in a range of comparisons where we did
00:17:29
that so the first was were people more
00:17:31
likely to take part if they were
00:17:33
approached by a nurse than an
00:17:34
interviewer were just asked to do it on
00:17:36
the web and the answer was no the
00:17:38
response rates were 78 to 80 across
00:17:41
those three groups with no real
00:17:42
difference but it took the nurse more
00:17:45
attempts to get someone to take part in
00:17:47
an interview than it did the interviewer
00:17:50
in terms of blood samples the nurse asks
00:17:53
people to give them venous blood or dry
00:17:55
blood spots with the interviewer they
00:17:58
left a kit so the participant could
00:17:59
collected by blood spot themselves with
00:18:01
the web survey they'll ask you in the
00:18:03
web server if they would like a kit and
00:18:05
if they said yes we sent it to them and
00:18:06
asked them to collect it so possibly not
00:18:09
surprisingly we got a lot more blood
00:18:10
when the nurse asked went and collected
00:18:12
it than when we asked people to do it
00:18:14
themselves
00:18:16
but in terms of the comparison between
00:18:18
Venus blood and dry blood spot we were
00:18:20
able to kind of equate create equivalent
00:18:23
risk scores so we kind of felt that that
00:18:26
worked quite well although the nurse was
00:18:28
much more successfully getting the blood
00:18:31
we randomly offered people feedback from
00:18:33
their blood or not
00:18:35
um of cholesterol and hba1c and perhaps
00:18:39
unsurprisingly that if you are offered
00:18:41
feedback you're much more likely to take
00:18:43
part online
00:18:45
um than if you weren't offered feedback
00:18:46
and this was most strongly evident in
00:18:49
the web survey and there was no effect
00:18:51
of feedback in the nurse interview which
00:18:53
suggests that the nurse encouraging
00:18:55
people to take part kind of feedback
00:18:57
doesn't make much difference but if
00:18:58
you're just sat in front of a computer
00:19:00
screen being offered feedback encourages
00:19:02
you to do it uh we ask people for hair
00:19:05
samples we've got very low response to
00:19:07
that we ask people to go and get their
00:19:09
blood pressure measured themselves at
00:19:11
their chemist or their GP and we kind of
00:19:13
got about 40 willing to do that and
00:19:15
those um results were pretty equivalent
00:19:18
to when the nurse or interviewer
00:19:19
measured them we got people to tell us
00:19:22
their height and weights and then we
00:19:24
measured them and possibly as we all
00:19:26
know
00:19:27
um that wasn't very accurate
00:19:30
so then the last data stream that we
00:19:32
have is genetics and epide genetics data
00:19:35
we have a whole genome scan based on the
00:19:37
human core and exome Chip which gives us
00:19:41
about 5 000 Snips and then we've imputed
00:19:44
that I think actually we now have more
00:19:46
than eight million but we also have
00:19:47
imputed data sets it's a bit more than
00:19:49
that and then we have also done
00:19:51
genome-wide methylation only for about
00:19:53
three thousands
00:19:55
3600 people uh where we concentrated on
00:19:59
those who've been in the bhps so they
00:20:01
had a long kind of Social and economic
00:20:03
history
00:20:04
beforehand and a random sample of
00:20:06
understanding Society
00:20:08
so that's a quick whisk through our
00:20:10
different data streams
00:20:13
um as I've been saying all the way
00:20:15
through nearly all of our data you can
00:20:17
get from the UK data archive where there
00:20:20
are three different licenses that you
00:20:22
can download for data under so the most
00:20:24
of our data is available for the end
00:20:26
user license where you just register
00:20:28
what you want to do with the data and
00:20:29
then you can just download it
00:20:31
automatically and there are some things
00:20:33
we do we don't include verbatim data
00:20:35
there we only provide government office
00:20:38
government Regional Offices we kind of
00:20:40
have aggregated versions of medication
00:20:43
and income and things there's a special
00:20:45
license version where you have to apply
00:20:47
for the data with an application but
00:20:49
then you can download it once that's
00:20:51
approved and that has a range of
00:20:52
geographies things like lsoa it has
00:20:55
things like School codes if you're
00:20:57
interested in looking at education and
00:20:58
more detailed classifications for things
00:21:00
like occupation and medication and then
00:21:03
we have data in the data archives uh Tre
00:21:06
where you have to be an approved
00:21:08
researcher there's an application you
00:21:10
can't take the data out it's it's in the
00:21:13
safe haven and they review your outputs
00:21:16
and there we have latitude and longitude
00:21:19
in terms of geography full dates of
00:21:20
birth and that's where all our linked
00:21:22
administrative data are
00:21:24
for the genetics and epigenetics data
00:21:26
you can access just genetics and Equity
00:21:29
genetics data alone at the EGA by an
00:21:33
application form to them directly but if
00:21:36
you want it in combination with the
00:21:37
survey data there's an application
00:21:40
system on our website you can apply to
00:21:42
get those data but you can only combine
00:21:44
it with the end user license data not
00:21:46
the more detailed data and then the
00:21:49
linked NHS data which I mentioned
00:21:51
earlier is available at the UK LLC
00:21:54
trusted research environment and there's
00:21:57
a kind of Link there for how you reply
00:21:59
to it
00:22:01
so understanding Society puts quite
00:22:03
quite a lot puts a lot of effort in
00:22:05
trying to support users to use the study
00:22:08
and we have on our website what we call
00:22:11
a pathway to using the study so uh this
00:22:16
on the website obviously you can kind of
00:22:18
Click through these things there's the
00:22:19
study overview user guide for each of
00:22:22
the data streams you can search for
00:22:24
variables so you would put in poverty
00:22:26
and it would bring up all the variables
00:22:28
in the study that had poverty in them
00:22:30
all our questionnaires and other
00:22:32
feedback material there as well as a
00:22:34
plan for how we kind of rotate our
00:22:36
content over time we have various videos
00:22:39
of how to use the data as well as kind
00:22:41
of interact
00:22:42
in-person training courses and Moodle
00:22:44
training courses as a FAQ and then a
00:22:48
couple of different kinds of user Forum
00:22:50
including being able to make
00:22:51
appointments to talk to uh the user
00:22:54
support team directly
00:22:58
so we were asked to give examples I've
00:23:00
got like a second I think having my
00:23:02
Emler and of the things that people have
00:23:04
done with the study and so I just took a
00:23:07
quick screenshot of our publication page
00:23:09
because this is kind of where you would
00:23:11
go if you want to see what people have
00:23:12
done with the study and the first three
00:23:14
public or the most three most recent
00:23:16
Publications are all really relevant in
00:23:18
terms of biomedical research I think one
00:23:21
on allostatic load and work uh one on
00:23:24
lockdown and physical activity and the
00:23:27
other on furlough and uh pandemic and
00:23:30
health behavior so you can see there's a
00:23:32
lot of different ways that people might
00:23:34
combine the rich social and economic
00:23:36
data in understanding Society with we
00:23:39
call more biomedical uh
00:23:41
uh topics so I'll skip them and just say
00:23:45
so if you want more information about
00:23:48
understanding Society we do have a
00:23:50
website with a huge amount of
00:23:51
information on it the data flow of the
00:23:53
data archive and there are these various
00:23:55
ways that you can kind of get more
00:23:57
information on a regular basis
00:24:00
thank you
