Snippet - FAIR Accessible #2 - A for Accessible III

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Snippet - FAIR Accessible #2 - A for Accessible III
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David Fitzgerald, Data Manager for the Australian Longitudinal Study of Women’s Health (ALSWH) presents how ALSWH makes a nationally significant longitudinal study with highly sensitive data accessible for others to reuse. The FAIR data principles were drafted by the FORCE11 group in 2015. The principles have since received worldwide recognition as a useful framework for thinking about sharing data in a way that will enable maximum use and reuse. This webinar series is a great opportunity to explore each of the 4 FAIR principles in depth - practical case studies from a range of disciplines and organisations from around Australia, and resources to support the uptake of FAIR principles.
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Thank You Keith okay so I'm David Fitzgerald the Data Manager for oh Sh oh Sh and I pronounce it that's the Australian longitudinal study on women's health and are we talking about the accessibility issues for this so I'm gonna first of all explain good background to the our study and then talk about the accessibility issues and try and relate them to the fit out of
principles which which I've just listed here and these is these act ones which I'm Keith the showed earlier so I won't go through them in detail but I'll try and relate these to us study okay so what is the study it's a it's a
collaborative effort project from the two universities of Newcastle and Queensland and in fact the two universities sort of they're sort of related to keeping the sensitive data which I'll talk about briefly it's one of Australia's longest-running longer - didn't know if we don't hippedy neurological studies so it's been going since 1996 and is ongoing and we we hope to go go further into the future standard by the Australian Government so we started off with over 40,000 women and a few years ago we got a new cohort of um of 17,000 women and I'll show you the four cohorts we work with here they are so the four cohorts are aged bathe
is based and and we define them in the years of birth so you can see this one the oldest one born 20 19 21 to 26 and there's three other ones of various ages and as you can imagine each cohort has their own health issues and that's what we are interested in and indeed the Australian Government is interested in so what are we collecting and our
methodology so health issues and in particular mental physical reproductive social health is more and also life transitions so the different ages of a woman obviously go through different life transitions life and things which related to health and employment health service use and and more and I'll just mention better data linkages I don't want to stress this because it's a big area with lots of issues but we have actually linked our survey data with some administrative data sets and in fact that list of their the NBS PBS and cancer agencies and emitted patient Hospital group and and emitted patient hospital these are the linkage can quickly sensitive and we treat them quite differently in how we make the data accessible so the data is
used extensively and particularly more than 680 peer-reviewed papers have been published using our data and also we we report back to the government frequently and national health policies have been informed by reports end use of our data okay so I'll go on to the sort of
aspects of accessibility and and see how it relates to her data so that one there about been retrieval by an identifier using standard communications protocol so all the datasets from our survey which analyzed and used have a have an identifier the same identifier and it's I just reseeded it's de-identified but with the consistent new identifiers and that's across all survey so any one using our survey data I've just put the caveat long as it's not part of the link to data but anyone using this survey data has one and only one identifier for use and we say this has been de-identified because that there are no personal names on the data at no addresses no post codes no dates of birth although the the year and month of birth are actually given so obviously to do things like I'm age analysis and any the other main ones but any other data which is deemed to be identified identifiable is stripped off the identifier is we call it the ID alias it's actually not the administrative ID which i respondent would see or somebody working in an office in newcastle who some communicating with our respondents they would not know what the identifier the analyzable identifier is they would have a different administrative idea and just on this point um any small cell sizes which we think i've identifiable as sort of grouped into larger groups and for example country of birth we we sort of group into broad sort of continental geographical areas to avoid particular countries of birth camp coming up and anyone using the data has to along with a number of other conditions they must not identify respondents which although we go to lengths to sort of make that very difficult but it's conceivable that something could come up about they promise and sign that they will not fight into fire respondents if they ever had that possibility okay so i was also
just sort of asked to sort of look at legal and ethical issues so we do have a legal contract with the Australian Government Department of Health and the fact that this is ongoing and it's we didn't get a twenty-year one and we are regularly updated and short-term contracts and also the ethic ethics committees from the two universities here have approved usage and effect every time we do a new survey because as long as you'd know if every year we're actually going back to at least one of the cohorts to survey them needs to survey which is not not identical to previous surveys is subject to ethics committee oversight an approval so that's up so we do have extensive on legal and ethical issues here so oh I want to talk about how
actually I'm a investigator or a reuse a word um would get access to our survey data so they and and as we explain this is all on the website but um they were must first complete an expression of interest form and and particularly they'd say who they are why they sort of serious researcher what they want us to find out from the Dalek and and that would be reviewed by our publications stuff so sub studies that's the PSA committee and um and if and then if it is if if they were GOI expression of interest is approved they will sign confidentiality don't use stock documents statements before receiving the identified data and they were also must um report back to us about their progress and they we expect some some some sort of some immediate work on on the data and for them to continue with their exes Madame but if they're expressionist is
successful the data are actually sent to them and this is this is an area work which Andre directly involved in and so we we do it before sending that I encrypt it we use 7z Sigma Z software and that's compresses it as well we use the net cloud store system to send data to the approved researchers reuses and an email was sent to them as well with with passwords but also to establish contact with the management here with server for future correspondents and I'll just put a note there about we have linked out about Whedon we never sent this out actually and anyone using this has to actually come to our offices all or actually there was a sex institutional facility which also can have it but we don't know and they linked at us and we've agreed not to send it anyway so public metadata so this refers back to the protocol been
open so we have a website which lists the the above procedure in fact that I went through but also has a lot of metadata on on it including a data dictionary which lists all the variables and the mini data sets we have a directory supplement which is a description of the frequently used variables with some some detail a data map that shows how the variables are used across the different surveys in cohorts we're not a different surveys the longitudinal we have up to eight surveys for um for some of our cohorts and so each one that's deemed a different survey and has slight differences from other surveys we have a list of all the variables used in spreadsheets for easy access we also
have data books which lists the essentially the frequency summaries the variables the question is that this that the respondents filled in technical reports which we produce should have go into detail on mini report and a frequently asked question page on not exactly that and so making metadata
accessible and that we make data although a doubt is not completely open we do want to make it accessible and we do archive both metadata and the data and we do that annually and with Australian data archives and although they are not releasing it yet the the plan is in the future for them to take over a release of our data perhaps when we're not doing it ourselves and and that that will be a role to keep our data sort of useful when used in the long term and yeah so that's what I've
got to say I'd just like to acknowledge the especially the the woman in our study who fell in the surveys and of course the the government Department of Health for funding us and the universities of Queensland in New South Wales for doing a job so thank you that's what I have to say