 on the catalog of mental health measures, discovering the depths of mental health data in UK longitudinal studies. My name is Behard Lichthard. I'm from the UK Data Service at the University of Essex and I will be joined today by Louise Arsenault and Bridgette Ryan from King's College London. My background is I'm a quantitative social scientist and I've undertaken research back in Berlin at the Max Bank Institute for Human Development and here at the Institute for Social and Economic in Research and Support and Training at the UK Data Service at the University of Essex here. Now, I would like to introduce to you, I'm very happy to be able to introduce to you Louise Arsenault and Bridgette Ryan. So Louise Arsenault is Economic and Social Research Council Mental Health Leadership Fellow. Her fellow role with the ESIC includes providing intellectual leadership and strategic advice in the priority area of mental health, advice on how social science research can best address the challenges, skills. Bridgette Ryan's research focuses on the production and maintenance of mental health inequalities using qualitative and quantitative approaches. She joined the team in July 2018 to undertake a review of the mental health measures in British longitudinal studies and assist in the development of the catalogue. As you can see from our listing, we will start with Louise Arsenault and Bridgette Ryan with the title, What, Who and How, discovering the depths of mental health data in UK longitudinal studies. Good afternoon and thank you for joining this webinar. So I am Louise Arsenault and I will speak to you for the first 20, 25 minutes and that portion of the webinar today will provide you some background about the project that we started two years ago. And after that, Bridgette will take over and Bridgette will give you kind of practical advice and she will kind of show you a bit the content of the catalogue and how to use it. But I will start by giving you just some background. So the first point I would want to make today is really to highlight and to emphasize the importance of doing mental health research. I think that more than ever, doing mental health research was important before the pandemic has just highlighted the urgency for studying the causes, the prevalence, the symptoms, the trajectories, the onset, the outcomes, the risk factors for having mental health problems. I think that it's quite clear that there is a crisis at the moment and we do need more research to inform detection, treatment, prevention of mental health problems. And I don't think that you need to be a psychologist or a psychiatrist to be doing mental health research. I think it's really important that people with the background in psychology, psychiatry or professionals in mental health conduct research on mental health. I think it's also important that people from different backgrounds integrate mental health as part of their research program. And in some ways that is exactly what the catalog aims to do is to really inform people about existing data on mental health that have been collected as part of longitudinal and cohort studies based in the UK. And that project was developed as part of my mental health leadership fellowship with the Economic and Social Research Councils where I proposed to the ESRC to really facilitate mental health research and maximize the uptake of existing data as part of cohort and longitudinal studies. So the project aims was really to create a hub that has information about already collected data on mental health and wellbeing in UK longitudinal and cohort studies. That project was funded only for one year so we really had to kind of have a focus and determine a little bit the boundaries of the project. So we decided to agree to focus only on UK studies for the time being. The aim was also to encourage the use of mental health measures in the UK cohorts especially for disciplines outside the field of mental health and also among early career researchers. So what we want to do is really to facilitate the uptake of mental health measures not just by mental health professionals and mental health researchers also by people from other disciplines and helping them to integrate mental health as part of their research. And second of all, we thought that it would be really important to have a tool the platform to support young researchers in developing their mental health, their program of research on mental health without having to focus too much on getting grants at the same time so that they can build a portfolio of publications using data already collected and quite often that are underused. Finally, another aim of the project was to promote projects on the harmonization of mental health measures and also to facilitate the work across different cohorts. By providing lots of information of mental health measures the catalog facilitate that kind of work. So at this point I want to just catch up my breath and also kind of acknowledge the contribution of the team so it's not just me working on that project so you will meet Bridget who kind of worked with me on that project from the very beginning. So quite a lot of the work that we will present it's basically Bridget's work. There's also Barbara Mon who is working here at the King's College London and Barbara has conducted a lot of work on mental health and using data from cohort and longitudinal studies. So basically she's a data dictionary on two feet. So we really tried to squeeze as much information as possible from Barbara. So that's really important. And then Lily kind of joined us as well as just recently. So she's a new kind of team member and Lily had the huge task of reviewing all the mental health measures as part of ALSPAC which is a huge study. And now she's gonna take over and get involved in other projects as well. And here you have John Rogers who's a very important member of our team. He is basically the web developer. So he's the one who developed the catalog itself as the way that you can see it all. So let me break down the catalog in few different parts. And the first element which is really important for the catalog are the studies. And again, I mentioned to you that this was funded for a year only. We had to narrow down which studies we could focus on to include them in the catalog. So we decided to focus on specific cohorts that met few criteria. And one of them was to include cohort studies or longitudinal studies that had multiple waves of data collection. So we cannot take just a one-off study or a snapshot study. We really wanted to have studies that had repeated assessment phases. We also, of course, this is about mental health. So it has to contain data on mental health. It has to have at least 200 participants at the first sweep. It had to be collected in the context of British or collected from British context. So we also have some international studies but they have a big kind of British component. And the study had to be ongoing and that's a bit of a loose kind of criteria. You may say, who knows about longitudinal studies? It's difficult to know from one year to the next whether they're still kind of ongoing. So that's a little bit of a loose criteria. We wanted to hear from the study team whether they have plans to collect more data and, most importantly, whether they have the staff to handle requests to access the data. So we managed to identify 46 studies that met all those criteria. So I don't know about you but I was quite surprised by this number when we first started the project. And I realized, ooh, I think that that's bigger than what I thought I would be able to do. So these are the names of some of the cohorts included in the catalogue. You may recognize some of them. It's important to mention that we do have quite a number of cohorts that are focusing on aging, so which is really important these days. So I think that this is something really valuable in the UK. One thing which was important for the catalogue was to make sure that we had a coverage of the four nations. So we do have studies from Scotland, Wales, Northern Ireland, and England as well. And then we do have some occupational studies as well, not very many but a few of them. We do have twin studies too, which are included in the catalogue. So hopefully you could kind of recognize some of your favorite cohort studies as part of this kind of snapshot of what we have in the catalogue. Another unit as part of the catalogue are the mental health topics. So we decided to focus on indicators of mental health problems, measures of impairment or difficulties resulting from mental health problems, measures of treatment, service use, and health seeking, and also measures of psychological wellbeing. So we didn't want to focus on studies that was included in, including kind of clinical population, but we want to see variation of mental health within the population. So the measures of psychological wellbeing was quite important in that context. However, again, because of constraints, time and funding constraint, we had to exclude anything which was kind of more cognitive measures, measures of personality and temperament. Having said that, we do have measures of personality disorders, but we do not include the ocean, for example, which is a well-known measure of personality. We don't include that, although we may have to review that and at some point include that. We also, we don't consider risk factors for mental health problems. So for example, we do consider bullying behavior as an indicator of conduct problems, but we don't include bullying victimization, which is a risk factor for the development of mental health problems. So these are all the mental health, we call them topic, included or covered by the catalog. And it's really interesting that quite often we find new things that are not well covered by all the cohort studies, but something that one study kind of has which other studies do not have. But you will see that there are kind of topics that are repeated across all the cohorts. So there are some very common one and there are some that are not so well covered by the cohorts. Now let me describe step by step what we did to develop the catalog. So the first part, what we do, so we did identify the cohort and the longitudinal studies that we can review and we also kind of identified the topics and then step by step, we looked the studies online and we check for key papers to have as much information as we can about the studies and about the measurement, what they included as part of their assessment. So we collect information and we organize the information about the measures including the items, the informants, the reporting period. So it's quite detailed and this is really kind of the work of Bridget. Once Bridget has reviewed a study, she's happy with all the information as part of her big kind of Excel sheets. Then we kind of discuss the review in a group, so with the team and we quite often we do have kind of questions, whether we should consider this, whether we should remove that, what do we mean about this? So we do review together kind of topics or things points that are not so clear. Once we're really happy with the review then we contact the study team and we ask them to check the work to make sure it's accurate and to make sure it is complete as well. Once we heard back from the study and that they're okay with all the information that we're prepared to share with the rest, then we kind of pass this on to John who will upload that on the catalog. And then we kind of do a bit of tests and then we can release the information. Here, this is a slide for me to catch up my breath once again and also to thank all the studies that have been working with us so far. So I told you that we have 46 studies and all studies have accepted to work with us and they accepted to check with us the review, they provide information when we ask for them, they provide feedback, they kind of share with us the tweets and they kind of disseminate the catalog. And to be honest with you, when we started this project that was a big fear that I had that the studies wouldn't want to share the information, would not be interested, would not reply to my emails. And it's been great to work with all the cohorts and we're really grateful for their collaboration. So so far we've reviewed 92% of the identified studies. We have very few left to kind of cover. And that means that we've reviewed 3000 mental health measures identified across more than 300 waves of data collection. In a nutshell, we have lots and lots of data which is out there accessible, but quite often they haven't been used as much as they could or they should. Mental health topics that are mostly covered by the studies would include depression, anxiety, psychological distress, measures of wellbeing, alcohol and substance use, they're the ones that we found across most of the studies, but quite often they're measured differently. Topics like eating disorders, gambling are probably less covered by the cohort so far. So what the catalog does, it does provide an engine to be able to search for mental health and wellbeing measures in UK cohorts and legitimate studies. It does present detailed information about the measures, including the items, the response scales, the informants and the reporting period so that people who wants to conduct research, they know what is available in terms of mental health measures already available. The catalog also highlights statistical properties of standard measures of mental health and wellbeing. So when a measure is assessed using a standard questionnaire, we provide information about that questionnaire itself. The catalog points to data access policy which can be different from one study to the next. And finally, we sign post-resources for conducting longitudinal mental health research including courses or online training. However, what the catalog doesn't do, it doesn't provide access to the data. So this is something that we really leave to the study to deal with. Quite often different studies have different policy for data access which have been agreed with the funders. So in some ways we don't step in and we don't want to change that. But what we provide is really information on how to access the data. We don't include measures of appraisal to the extent to which a measure is suitable for a particular project. So somehow we expect the researchers or the catalog users to do a bit of their homework beforehand and really kind of explore and investigate whether a measure is suitable for their project. We cannot kind of give that kind of assessment. As I said before, we limit to, the catalog is limited to mental health measures and we cannot cover other topics. We don't cover trials or experimental research either and we don't provide research training. We can only kind of give you information about what is available out there but we don't provide such training. Here I just want to mention that my role as the fellow for the ESRC was renewed in March, closely matched with a pandemic. And when I proposed to the ESRC to renew my role, I didn't had COVID in mind but there you go. So we had to adapt and Bridget and I with Barbara and Lily as well, we decided to include measures of mental health that were collected by cohorts and longitudinal studies in relation to COVID. So there's lots of information out there now about the impact of COVID on mental health collected as part of longitudinal studies. So the beauty of that is that those studies will provide measures of mental health and well-being prior to COVID and after COVID as well or during COVID and Bridget will show you where to find all this information as part of the catalog. We have detailed information as part of that and just wanna point out that 52% of the cohorts that we have in the catalog have taken the steps of collecting more data in the context of COVID. So there's lots out there. So this is the front page of the catalog. So when we kind of were thinking about some kind of the theme we really kind of got this idea of seeds that long time ago, the funders and lots of researchers kind of planted some seeds to collect information about mental health and that kind of grew in beautiful data and that keeps on growing and growing and growing and lots of information that have been collected a long time ago. Some people may think it's not interesting, it's not good, it's outdated. Actually, it's more valuable than ever in the context of what's going on right now. So it's really important to explore what we have and to make the most out of it. So there's also a link between, as you can see in front of you on the slides, you see that we use the plants, the seeds, and then you can see that behind me there's lots of plants as well. And usually Bridget will have lots of plants as well but you cannot see that. So okay, at this point I will invite everyone to either use your tablet, your phone or your laptop and you may want to join the catalog so you can have a look. I suspect that maybe some of you have already done that but it would be important if you want to follow the next part with Bridget that you have access to the catalog. So we'll give you some time and I can see that there are some questions. Is that right Bridget? Yes, so I've just put the link to the catalog in the chat as well in case that makes it easy for anyone. And yes, so we have a couple of questions from Lawrence about some of the studies that might suit their research and I think I might actually kind of answer that in the demo and show you how you can find. So Lawrence is looking for studies that are useful for study mental health but also physical health and biomarkers. And so there is actually a way you can kind of narrow down the studies in the catalog to studies that will include those types of measures. So I will show that very soon. I think that will be the easiest way. And so if anyone's having any problem accessing the catalog just let us know in the chat or the Q&A. But if everything's going okay, I will try and share my screen if you can see that. And so I'll give you a kind of quick tour of the catalog and a bit of a demo on how you can use it to answer those types of questions. So here of course we have our homepage which you just saw on the WESA slides as well where we try to offer kind of some overview information and links to where you can find different things in the catalog. But before we get into kind of the search function I'll just show you all up here we have kind of some of our side pages which can provide a little bit more context to the catalog or a little bit more detail about some of the topics that we cover. So in this project section we have our pages that provide some background and gathering information which will kind of cover the detail that Louise just kind of provided to you all. So if you need more access to that or want a bit more detail you can find that there and a guide to using the catalog as well and then this COVID page which I'll come back to a little bit later. And then in this mental health and wellbeing section this is where we're really trying to support researchers who maybe are specifically mental health researchers or they don't typically use longitudinal research. So on this page we provide a bit of background into longitudinal data in the UK. And then on this page here we provide a bit of overview information about some of the really widely used mental health measures on the catalog as well. And so here you can see for example for the audit we provide just a brief overview of the measure as well as some of the key references that people can go to. And I think what we're doing on this page is trying to give people a starting point to then go and find more information themselves to try and expedite that rather than saying oh this is the best measure and you should use it in your study more to kind of provide people with information so they can make that decision themselves. And so then we also have this page about harmonisation as well where we talk a little bit about the harmonisation of measures and then highlight some projects that are working in the area as well. Then in our resources section we have our training page which we're hoping to update soon with all of the new online training that has merged in the last year. And then hopefully soon we'll have our expert panel there as well. But really the core of the catalogue is over here in the search functionality of the catalogue. So what you can see here is we have all of the amazing longitudinal studies on the catalogue listed here. In fact we have 42. And so of course the first way you could have a look through if you're not really familiar with the studies is to just scroll through and see, have a click on the one that you think is interesting. But that could be quite laborious. So what we have here is our search bar. So like it says here you can search for the name of the study, a particular measure you're interested in or a mental health topic that you're interested in. So let's say I'm interested in wellbeing. So I could just type in wellbeing here. And then it will really, it will start cutting down the studies here. So you can see there's still 33 studies that have measured psychological wellbeing in the catalogue which is great. But again that's quite a few. So to narrow them down I can use these filters as well. So the first filter here is the kind of related themes. And so these are topics that we think researchers might be interested in but which we don't provide detailed information about. So we provide a lot of detailed information about the mental health measures. But maybe not about diet nutrition or ethnicity and race that we know people might be interested in that. So for example Lawrence was saying that they're interested in studies that have biomarkers. So you could use that filter to cut down to only those studies. Or if you're interested in physical health we also have a physical health filter as well. So those are studies that have collected measures that are related to that. We also have a COVID filter as well. And so this will filter for studies that have collected new data during the pandemic. Because we know a lot of people are very interested in that. And the studies have been working really hard to get that data prepared and ready to release. So let's say I want to make sure there's COVID data. And I also want genetic data as well to have been collected by the studies. So that cuts me down to 16 studies but I still feel like that's too many. So then we can use these other filters as well to reduce the number. So this one here is the age of recruitment of the participants. I'm interested in studies that have data from early childhood. So let's say I want the participants to be recruited before they were six. But I want I don't want them to still be children. So maybe I want the study to have started a little earlier. So maybe I want it to have started before 1978. And you can also bring these up as well because like you can see we've got studies that started as early as 1931. So you can play around with these and similarly with the sample size as well. And so then you can see we're down to two studies here. So we've got BCS 70 and the 1958 cohort. So let's say we're interested in the 1970 cohort. And so here is our page for each study. So every study has this information available. And so what we're trying to do in this section is provide some overview information so that users can work out whether the data from this study is suitable to their needs and what they're interested in looking at. So you can see here we have the overview information which provides some brief detail about the original aims of the study, the institution where it's based, the geographic coverage as well because we have some that cover all of the UK or specific regions or even some international cohorts in addition to the UK. Then here we have information about the sample. So we know that this is a birth cohort study and we know a little bit more about how they were recruited because that's of course extremely important. The number of participants at recruitment and at a recent suite in the age of recruitment that sort of thing as well. So then we come down here and we have our data section. So like what we said, we don't hold the data, provide access to data, anything like that. But what we do try and do is again provide the first piece of information that users can then take and pursue on their own. So we know that BCS70 is on the UK data service which is great and then we provide the link as well to how their guide for how to access the data. We just have here as well that they have internetic data and routinely collected administrative data is also linked which is great. Then some extra information about their website and a core reference paper as well which will hopefully be useful to people to get a bit more detail than what we provide here. But then the most detailed section down here is our mental health measures timeline and this is where we hold the really detailed information about the specific measures. So the timeline you can see here covers the whole life of the study just make this a little bit wider and you can see that each dot here represents a different data collection event. Oh my internet is going a little bit slowly. Okay that's cool. And so what you could do is browse through or you could search as well but maybe I'm interested in browsing what do they collect at age 10. So you can see we provide some of the top line information here. So the topic this is the mental health topic that the measure is measuring. So here we can see we have a measure of ADHD, emotional behavioral problems. Then we have the name of the scale. So if this is a standard scale we'll have that name here. So like the commerce hyperactivity scale or if it's a non standard instrument we'll provide just a little bit more detail about what the questions are about. So this is of course the person that the measure is about. So here we have the cohort member but we also provide information about measures of mental health in anyone in the cohort members family from their generational older. So siblings, parents grandparents that sort of thing. Then we have the informants. So the person who provided information. So we can see here we have mother, teacher report and self report which is great. And then you can also sort by whether it's a standard instrument or not because we know some people might prefer to use standard instruments. But we're interested in well-being. So let's type in well-being. And so what you can see here is the trees will grow whether well-being measures are. So then you can have a look through and say maybe I'm actually interested in well-being when they're a bit older. So age 42 we can see that there was three well-being measures here but where I like to look at this work in a bra scale. So what you can do is click on the measure and that's this is where we provide that really fine grain detail. So we have the reporting term for the measure, the specific items that we use and the response scale as well. If there is anything particular about the way a measure was collected or unusual we also can include comments here as well. And what you can see as well as we have this eye and that provides a little bit more overview information about some of the standard measures as well. So that's kind of how that page works. But say we've decided we're interested in this and I'm interested in using the work in a bra scale. So I could also search for the name of the scale as well. So you can see here there's seven studies in total. But also if I know that I want to access the BCS70 data and I want other data that's available on the UK data service you can also search it's better if you use the Inverter Commons but if you search UK data service then it will filter down to the studies that have deposited their data at the archive which might be helpful for some people as well to know that that data is available there. And just in terms of the COVID data as well of course we can use this filter here just to filter down to the studies. But we also have to kind of get the information on the catalogue quite quickly we also created this COVID page. And this is where we provide slightly higher level information but in a way that's easier to compare across studies as well. So here on our COVID timeline rather than being data collection points in one study we provide information about data collection in all of our studies that have been trying to collect data during the pandemic. So each dot here is a month in 2020 it gets a little bit further as time goes on to 2021 but what you can see here is say we're interested in August you can have a look and see all of the studies that are on the catalogue that have collected data in August 2020 and then if you click on them here the specific measures they used and then which participants were included we know for some studies if we look at maybe if we look at ALSPAC for example or TED sometimes they've collected data from the cohort members and their parents or and their partners the method this is of course mostly online questionnaires during the pandemic but for some of the aging studies we also have telephone interviews as well and then information about data access because we know a lot of these studies have been working hard to get their data deposited quite quickly as well so that's kind of an overview of the catalogue and how to use it I don't know if we have any questions that have come up Q&A we do have one question which was information about which regions that question kind of appeared before you kind of got to the study page so yes there is information about which regions are covered by the study if you go on the study page you will kind of provide this information and I think it's important to mention that this is an inception so recruitment of course being part of a longitudinal study people are moving around so it doesn't give information about where they are now but it provides information about where they were at inception and then type of places so urban, CERME urban, rural I don't think that we do have that kind of information in the catalogue but I think that this is something that you could find if you kind of read the reference paper that we provide probably there is that kind of fine-grained information in those papers yeah and I think if you browse through some studies maybe if you're interested in a specific region they kind of come up by name so we know like the born in Bradford they're listed as of course being in West Yorkshire and Bradford and then we have some of the other studies like the cognitive function and aging studies the original CEFA study has a sample from Cambridgeshire Wales Newcastle and that sort of thing as well but yeah that's probably the best way to find that information I don't know if there's any other questions in the chat maybe oh yeah there was a question about looking at adverse childhood trauma so I think using the filter you can have information about this so that was that happened before you that question kind of appeared before you kind of explained the filters so it does partly address that so we don't cover or we don't go into providing details about childhood trauma but we will kind of highlight studies that have measures of trauma or adverse experience and these filters are means kind of everything that could be matched you know with mental health if you think of something that would be extremely helpful you can kind of make your suggestions in the chat box that would be helpful it looks like that's all the questions for now we do have an activity that we usually get if you can post that on your slide so this is to give everyone a chance to have a play around with the catalogue and so what we're looking for is a study that meets these criteria so we're interested in finding a study that has measures of ADHD that's useful for studying education as well as studying ethnicity and race and we want the participants to again be recruited before they turn to five so hopefully you're all able to access the catalogue and have a look through the search feature once you find it please put it in the chat and we'll see who can get there first yes there should only be one but which which study is it wow that was quick hope there's only one that's what I was that's what I'm intending but sometimes it doesn't quite work out that way it seems like there's only one maybe yes so that one is MCS maybe I will quickly show you oh no I don't think there's a need to show but if anyone has any questions about how to access that can I stop sharing no no that's fine and then we have one more which is usually are slightly more difficult which is mental health measures timeline so if you can get your way to growing up in Scotland birth cohort one and this one is slightly tricky because there are three growing up in Scotland cohorts on the catalogue but if you can get to birth cohort one we would love to know if you can find how many times SDQ has been collected and then as a bonus round which performance information yeah we don't have budget for prizes yeah we need to start getting away plant cuttings or something yes that's what that that we can I can cover outside my budget yeah I thought that the previous answer was quite quick actually yes that was one of the fastest we've ever had so well done everyone there's a question in the Q&A yes can we yeah should we answer now or should we wait should we wait a little bit so that people probably are kind of going through the search and everything so Louise you actually have the answers to this one the admin says SDQ has been collected six times so does Matthias oh oh yes sorry oh dear yes yes looks like Jingwin has got it as well yes and who the cohort members yes wow carrot teacher self report yes Claire and Amy got all three first try so yeah clearly there's a lot of really detailed data available there so it's great everyone managed to find it which is ensuring that the catalog is easy enough to use and so then I guess one more question from Patrick which was asking whether you can filter by instruments included so the measures with the IADL which I'm not actually familiar with or the SF6 so that is somewhere where it's really useful to search so if it's a mental health measure just search for the name of the measure and all the studies that include that instrument will be included so the SF6 would definitely work because that is a measure of psychological distress that we include on the catalog same for the SDQ or basically any standard measure of mental health I'm not sure about the IADL if that's a measure of physical health or basically something not related to mental health then we don't have the ability to search right now so both are physical health measures we don't have specific physical health measures on there right now unless it could also be used as a mental health measure so the short form health survey you actually can search and it's been used quite a lot in the cohorts and maybe that's a little side way to searching for that we may want in the future that we will be part of our plan to kind of depending on funding but this is something that we would want to do include physical health measures as well that could be good yeah perfect I don't think there are any more questions yes so shall we move on to the next slide yes so just to give you an idea I think that it was quite pleasing for us to kind of realize that it was working this kind of started as being a wild idea not being too sure whether people would use it whether it was kind of useful and whether cohort studies would work with us in making this happen and we launched the catalog in November 2019 and it seems to be working well so we do kind of follow the analytics of our website and just to let you know that the users are quite multiple you just send that information to me earlier today Bridget but it is not just used by people in the UK but it is used by people around the world so that is that is wonderful to know that people from different countries from different background are using the catalog to find out more information about the measures of mental health that are available for their research so in some ways I think that at the moment we are kind of finalizing the cohort studies so I mentioned ALSPAC, ALSPAC is a huge cohort and Lily kind of just finished reviewing it with Bridget and at the moment the file is with John so it should be kind of uploaded kind of fairly soon hopefully yes and then it will take us a while to kind of making sure everything is alright share it with the team to make sure that they're happy with it so it should be released you know at the end of the month fingers crossed and we do have a few more studies to they are all reviewed we're waiting for the study team to tell us that they are fine and then we're kind of considering what else would be valuable so it would be great to hear from you telling us what would be valuable for your program of research on mental health but we think that and that was mentioned by other people that maybe having a few international cohorts would be helpful so that would provide some kind of a baseline or kind of an indication about what is being done outside the UK so for example one of the most common measures used in the UK for children's mental health would be the SDQ the strength and difficulty questionnaire but if you look outside the UK it's not used that often you know the CBCL would be more used so in some ways I think it's important to have some kind of reference you know outside the UK we want to provide more resources for people who want to use those data so providing more information about online training courses we also want to develop a panel of expert who would very kindly offer their suggestions and help for people who are not familiar with mental health measures so now that we have something which is up and running I think that we are in a good position to approach people saying hey do you want to be part of it before I think it was a little bit tricky because we didn't have anything to show but now I think we have something solid that we can propose to a panel of expert and also mentioned to you that maybe we would want to broaden the concept of mental health I think that we need to revisit what we have decided to include so I mentioned personality temperament that are not included we may want to revisit that decision there is also discussion about including mental health, physical health measures as part of the catalogue and one thing which I think would be extremely helpful would be to have another catalogue with risk factors probably kind of social risk factors and that those two catalogues could speak to each other I think that that could be instead of just having those filters which are helpful but then we can do something similar that we did for mental health for social risk factors that could be helpful so some of them are really kind of ongoing something that we are already kind of doing or we want to plan we are planning to do kind of quite soon other things are much more kind of dream wish list depending on the funding of course as always so we have a bit more time but before oh wait just yes just want to say that it's we don't see the catalogue as being something fixed and we don't think it's perfect or it is correct it's a little bit like Wikipedia so it's kind of nice when people kind of get in touch and tell us you know it happened in the past some people kind of said hey what about our cohort study so then we're very happy if they meet the criteria we're happy to kind of include or to discover kind of new cohort studies that's great if you find a mistake that's good as well if you tell us what would be helpful for you that would be great and you can also join our mailing list how do they do that Richard? are you muted? this QR code here should lead you to join our mailing list or if you just go to the home page and scroll down there's a little form there that you can just type in your email and yeah you'll be kept up to date I think that we have more questions can we yeah so we just have one from Corinne sorry if I forgot that but they asked about our filter to linkage administrative data they are if it's specifically noted anyway if the data has been linked to help service use no we don't have that specifically I think there are some other platforms so you may have heard of the lesson data platform I think with Anne John and Swansea that's what she does she does really only kind of administrative data for young people young people's kind of use of mental health services and so you may want to kind of access that platform I think it's really complicated to use that and to transform the information and scripts and all of that so this is something that we could not take on board but I think that for Wales and kind of provide that kind of information if you are specifically interested in mental health services we do include measures of like self-reported service use or treatment but yeah like Louise said not a lot of fine-grained detail about linked administrative data right now and then I think Claudia has asked I was wondering if it's possible to not just access the questions using the questionnaire but how to score the questionnaire so we provide the response scales that participants had available because of course sometimes for the same questionnaire they'll be or the same instrument they'll be offered a yes and no answer or like a four point scale five point scale so we do provide that there but we don't the information we provide is based on what was collected but not necessarily the way it's scored by the studies so I guess when you're getting to that next level accessing the data that's when you'll be able to look into the specific values provided with the score but if you're interested in the response options we do provide that information just below where the items are in the timeline great and there are no more questions I think and it's four o'clock so I think that we can move on to our next speaker Beata will explain more about the UK data service what service they can provide when it comes to mental health and please stay online after to kind of fill the survey and we will stay as well so please if you have any more questions we'll stay online for a bit longer great thank you so UK data service introduction to data on mental health just to give some more information where you can find data on mental health and also how to access many of the data sets that Louise and Bridget have introduced to you which contain information on mental health so the roadmap for me today will be who are we so what data are available via the UK data service and third where to find and access data resource and help so first of all what is the UK data service it is a comprehensive resource by the ESRC it's a single point of access to a wide range of secondary social science data and we provide access support training and guidance this is a website of the UK data service and one thing I would like to highlight is you will get all the slides and the recording of today on our website so you go to news and events and on the left hand side you see events and past events so today it's events but tomorrow it will be past events and you will find the webinar the catalogue of mental health measures and when you click on that link you will then also see the slides and the recording so who is the UK data service for it is for academic researchers and students it is for government analysts it is for charities and foundations business consultants independent research centers and think tanks our data sources come from official agencies so mainly central government national statistical time series as well and we get data from individual academics so once you finish your research grant three months after your project stops you are asked to submit your data to the UK data service and we need to make them available for research so we get data from market research agencies we hold public records from historical sources and we also have access to international data via links to other data archives worldwide the types of data collections we hold a survey microdata aggregate statistics, census data and qualitative and mixed methods data so this is an overview of our key data and on the left hand side in the green box you can see our access levels so we have 786 open data available 6985 safeguarded data and 224 control data out of which 176 are secure lab data which you can access remotely from your institution and 48 out of those control data are secure lab data safe home access only data so you would need to come to our safe home here at the University of Essex and then you could access the data however at the moment you took COVID-19 this is not possible but we hope it will be possible very soon so our key data are UK survey data which are large scale government fund surveys like the annual population surveys labour force surveys etc etc then we have the longitudinal surveys following individuals over time which Louise and Richard already mentioned previously then we have the international macro and micro data we have qualitative and mixed methods data census data business micro data mainly our secure lab data and we also have records for administrative data for which the ADRN has negotiated research access and finally and this is my personal pleasure to announce we have international controlled micro data so controlled data secure lab data so we make an IAB Institute for Employment Research a German controlled micro data available via our safe home and also French controlled micro data so this is mirrored on our website the structure I just showed to you so you can see here use the key data the same structure now I would like to say a little bit more about the international data access network I'm representing the UK data service in that network and the project is a collaboration between six research data centers from four countries France, Germany, the Netherlands and the United Kingdom and the aim is to facilitate research use of controlled access data between the RDCs via reciprocal provision of safe home remote desktop access so we have international controlled micro data from the French secure access data center and here I provided the link to the data and also how to apply for it just to highlight the relevance for what we are talking about today I have just listed themes and highlighted in orange that there is also data available on health handicap and dependency for example and the same for the German controlled data that we make available here I have put together some snippets from their website and again highlighted in orange the study on mental health at work so that is of relevance as well just to give you an idea of what international controlled data would be available and you could access them via our safe home once it is open again now these are just some examples of the longitudinal data that are available via the UK data service and it was already mentioned before so we have for example the four long cohort studies, the 1958 national child development study, NCDS the 1970 British cohort study VCS 70, the millennium cohort study and then also the next step study previously known as a longitudinal study of young people in England and that fits in quite nicely in between the British cohort study and the millennium cohort study as it is of the date 1989 and 90 so it actually shortened the gap between those two and it was acquired a little bit later then we have the British household panel survey and its successor understanding society or also known under the name UK household longitudinal study then we have families and children study, I also wanted to mention that actually this understanding society study has 100,000 individuals in 40,000 British households it's enormous so the British household panel survey which is included understanding society study had 5,500 so it's four fold if you wish and then we have English longitudinal study of aging, families and children study, our future growing up in Scotland and also closer resources etc etc I can't name them all and also I know you're quite tired presumably after one hour so I try to keep it to a minimum we have all our information on COVID-19 available on our website you are on top and then also this is the starting page and then you can go into details what data are available containing COVID-19 information and these are not only new datasets specially designed to study cooperating additional modules if you wish on COVID-19 related topics so we have our normal UK service for example also including now information on COVID-19 so obviously the longitudinal studies that were already mentioned so I don't need to repeat that but for example the opinion and lifestyle survey COVID-19 module is available so the coronavirus study is available via the UK data service etc etc so you have lots of additional studies on COVID-19 data and mental health they include topics as well available now how would you find the data so you could you could search by going to get data on the left-hand side key data and then just search for longitudinal studies if you want to just look at longitudinal studies or you could go to the data catalog and you can here search for studies and you don't need to specify longitudinal studies for example and just type mental health and you see circuit in orange that we have 252 studies containing information on mental health and actually when you go down that result list of 10 pages but I mean on the first page just a bit down the first page you will find the catalogue of mental health measures 2020 so that's exactly what Louise and Brigitte were talking about now if you don't really want to scroll through 252 studies on mental health you might just look at the series so for example the psychiatric mobility surveys you can actually go down and look at the different studies involved in that series so that would be maybe a little bit easier I think it's more doable than looking at 252 now data access who can actually access our data well basically all registered users so however which data can be accessed and the particular access conditions vary according to the user type so whether you are from higher education further education further education institution or whether you are from a non-higher education further education institution or even non-UK researcher then second it depends on the usage so on the project characteristics and also whether it's commercial or non-commercial and lastly on the specific data access conditions attached to the chosen data so here whether it is an end user data set or a special license data set special conditions data set or secure lab data access or safe home access data set now basically it's mainly web access but this only applies to open and safeguarded data not to secure lab data and those first two categories are freely available for use in higher education institutions we supplies the data in a variety of formats so in SPSS data format as databases but also as word process documents and pf documents for qualitative data sets for example now how to access the data step by step so first you would register with us you would then agree to an end user license you would select the data from the catalog specify a project describing it in 30 words then you could download the data to your machine if it is open or safeguarded data or you place an order for the other data and complete all relevant forms and we take it from there this process is actually shown on our website under get data how to access download and order and this is actually the process for secure lab data remote access to secure lab data so you would not be able to download the data onto your computer because the access is via a web based interface that uses secure encrypted Citrix virtual private network technology and the data is not downloadable as I said the access is only remotely accessible from your organizational desktop however now during COVID-19 emergency we have special agreements in place and our website will tell you what these are in order to make the data accessible because it is more than ever important to get to the data and actually provide good research for decision-making now the outputs are all subject to statistical disclosure control basically the whole process is in this graph so you register orders of data become an approved researcher then you have to complete a service agreement you complete a training this is a safe researcher training that lasts four hours and is provided online at some moment it used to be face-to-face one day in London then you will receive your unique login you can work remotely in the secure lab and then you will place an output request we check it for SDC and then once everything is okay you can publish your results and we can actually before release it to you to do so now as I said we have three access levels broadly open safeguarded and controlled I think you might just need to know more about it once you know which data set you need so let's just continue to support and resources being fully aware of the time so we have lots of support and resources available we provide video tutorials and webinars we have also data skills modules available online so for example on longitudinal data we have a module which is in the box on the right hand side and you can see here what units it consists of and then I have also provided the URL so you can easily find it we have case studies available so you can get an idea of what other researchers did or what could be done we have guides we have some themes we have advice on managing and sharing data and also on teaching with our data and providing resources for that and then also we run a help desk and individual user support now video tutorials you would find under use data and video tutorials case studies under use data and data in use and they are grouped and here you also find the group health and well-being so this is where you would go to find case studies on mental health obviously teaching with data our data are well used for teaching you find advice under use data teaching with data and here you see how to register your class teaching resources available ideas even for teaching and finally help so we have FAQs and also the usual get in touch online forms we have telephone number at the moment it is advisable to email and we are on twitter, facebook and youtube that's it for me any question please ask now or write an email to support at ukdataservice.ac.uk