Keeping your data safe

Behind every discovery we make, there’s something just as important we're focused on: the security of your data.

At Children of the 90s, we’re proud to be one of the most detailed health studies in the world. That’s only possible because thousands of participants like you have chosen to share information with us over the years. We take the responsibility of looking after your data seriously.

“We know that this involves a combination of openness, high quality and trust,” says Professor Nic Timpson, Principal Investigator of Children of the 90s. “You’ve shared valuable information about your health and life and it’s our job to protect it with the highest possible standards.”

Our dedicated information security team works constantly to make sure your data stays private, secure and that it is only used for ethical research. Think of it like this: your personal details are stored behind a series of secure gates. Only approved researchers with a real need and a clear public health goal are ever allowed through - and only under strict conditions.

We are proud to meet the internationally recognised gold standard, ISO27001 information security, which we’ve held since 2012. Every year we undergo a robust security audit with the independent British Standards Institution (BSi) to ensure we still meet the required standard.

So how do we keep your data safe in practice, and what does that mean for you?

 

Your personal details are removed

When your records come into our system, we remove any personal identifiers and replace them with a unique study ID. This means researchers never see your name, date of birth or address. Instead, they work with de-personalised data, so they can learn about public health without knowing who you are.

 

Projects are checked

All research using Children of the 90s data must meet strict ethical and scientific standards. Where relevant, projects are reviewed by:

  • Our Ethics and Law Committee, which includes expert members and participants
  • Our Executive Team, led by our Principal Investigator
  • The NHS Health Research Authority, which protects your rights, confidentiality, and wellbeing
  • The ALSPAC Participant and Public Advisory Panel (APPAP), made up of study participants and members of the public with a diverse range of backgrounds and experiences

 

We use a security framework developed by the Office of National Statistics (ONS)

This is known as the ‘Five Safes Framework’. This framework means we only provide controlled access to sensitive and confidential information to approved researchers. 

Safe People – researchers must demonstrate that they have the technical skills to use the data and that their institution has a robust data protection policy in place. They must also sign a legally binding agreement promising to always protect the confidentiality of your data.

Safe Projects – researchers must show that their proposed research is an appropriate and ethical use of your data. It must deliver clear public benefits. They must publish their results to enable use, scrutiny and further research.

Safe Settings – when we share data with researchers, they analyse the data at their institution following the strict instructions they have agreed to. They must not transfer data outside of their agreed research group. Data received with your consent from the NHS or government departments is held securely in our own Data Safe Haven, used only by specifically trained staff who ensure the data is depersonalised.

Safe Outputs – researchers receive only the de-identified data that is required to answer their research question. Data is encrypted and securely transferred to the researcher and each project is allocated a unique ID so cannot be used by anyone else. Before any research using your data is submitted to academic journals for publication, we check the paper to ensure that no individual study participants can be identified.

Safe Data – with all the above, we de-identify the data. We do this by removing names, addresses and any other details that would directly identify an individual person. We do this before we make them available for any analysis

 

Thank you for continuing to support one of the world’s most valuable health studies. Your data is helping to make life better for future generations.