How official and digital records are used in Children of the 90s' research
Children of the 90s supports ground-breaking research into the causes of the world’s most important health and social problems.
We follow our participants’ health and life events via data collected in questionnaires, clinic visits and other studies.
Important health and lifestyle data is gathered via participants’ official records, such as those held by the NHS, the education system and the Department for Work and Pensions.
Children of the 90s would now like to use other digital records to help us learn more about health and wellbeing. Digital records include store card data (e.g. data from a Tesco Clubcard or a Boots Advantage Card) and social media. If participants wish to take part, they can ‘opt in’ to share their data, including their store card data and social media.
Changing your mind
If you do not want Children of the 90s to use your official records in research, you can opt-out at any time.
What is data linkage?
Children of the 90s would like to follow your health and life events by linking to your official records; such as those held by the NHS, the education system and the Department for Work and Pensions. For some of you this may also include information about criminal convictions and cautions. Children of the 90s would also like to collect other data from such diverse areas as social media, shopping and other local studies. We call this way of collecting information ‘data linkage’.
Data linkage gives us information that is difficult to get using questionnaires or at a clinic. Some of it you wouldn’t know, for example the precise dose of an antibiotic you were given as a baby.
How does data linkage work?
This short animation helps explain how health records are used in general University based research
These documents help explain how data linkage works in Children of the 90s:
- Children of the 90s Linkage Short Summary Leaflet (PDF, 816kB)
- Children of the 90s Linkage Detailed Leaflet (PDF, 3,111kB)
If you are not sure about Children of the 90s using your official records to enhance its research:
- get in touch if you have any questions about the information on this page
- let us know what you decide by returning the form we sent you (we can send you another form if you let us know) - Data Linkage Decision Form (PDF, 166kB)
- remember, you can opt-out at any time just by letting us know
- if you want to opt-out of a specific research investigation, you can do so by having a look at the projects we are running and letting us know before the project starts.
You can call, email or send back a copy of the form above. You do not need to tell us why you don’t want to take part in this bit of Children of the 90s. We appreciate that people have different views on how their personal information should be used. It is your decision.
Remember: we’re very careful to keep all of your information confidential. With everything we do at Children of the 90s we want to protect your privacy and commit to using the information you have provided in an appropriate way. Read about our commitment to you.
What to do if you change your mind
Taking part in the study is voluntary, you are free to do as much or as little as you like. If you change your mind about taking part in some or all of Children of the 90s then let us know.
Feel free to get in touch. If you want to talk about this or need more information then feel free to get in touch. Thank you for taking the time to think about this, remember what you do can really make a difference!
Children of the 90s and Data Linkage Collaborations
Children of the 90s is committed to making it clear and easy to understand the study. We aim to make it as easy as possible for researchers to access our samples and data. We have always worked closely with external researchers and encourage collaborations between organisations.
At the beginning of the COVID-19 pandemic, Children of the 90s helped to found the UK Longitudinal Linkage Collaboration (LLC), a national Trusted Research Environment, the UK LLC is run by the University of Bristol (see here), and brings together de-identified study data and linked official records of participants from over 20 UK longitudinal studies.
Approved researchers can more easily access participant data by combining the data from a large number of longitudinal health studies in this way. Researchers also benefit from accessing these multiple studies through a single point of contact; and they can use this data within the UK LLC but are not able to remove data from this secure environment.
Children of the 90s has seen the success of this collaboration between studies in the field of COVID-19 research and are encouraged that this method of combining resources can provide significant benefits in other areas of research. No personal data or identifiers will ever be provided to any other study, or collaboration of studies. Children of the 90s and our researchers continue to honour our participants' individual instructions on which areas of your data (e.g. health, education, environmental) you allow us to access through secure data linkage. You must let us know if you do not want your data used in this way by getting in touch.