Local NHS services, social services, and schools routinely collect valuable information about children and young people. Researchers and professionals with the right credentials already have legal permission to apply to use health, education, and social care data to improve healthcare services. The problem is that when they need to work with a large amount of data, perhaps to measure the levels of child mental health in different organisations within a region, or to understand the impact of a new service that is introduced, it can be difficult to pull it all together because the data they need is scattered across so many diverse sources.

CADRE (Children and Adolescents Data Resource) has been developed to try to solve this problem.

CADRE will allow researchers to understand healthcare needs better, by building a bigger picture around the problems children and young people face, how they are getting on at school and any social problems that might be affecting their area. This will help us come up with better solutions and understand which types of treatments and support are most effective. It should also help local service providers allocate their funding where it’s needed most, and to the right people.

For example, in one project, Timely researchers plan to use data to help them design a suite of AI and digital tools to help professionals such as GPs, social workers or hospital staff to identify young people who might be struggling with mental health but aren’t getting the help that they need.

1. Local services agree to share their data about children and young people with CADRE

2. Information that can identify a person (such as names, addresses, NHS numbers) is removed from clinical data while it is still in local services.

3. Once the de-identification has been checked, the de-identified datasets are securely fed into the CADRE database.

4. The data is linked together and securely stored.

5. Within CADRE, data is converted into a common format and organised so researchers can use it more easily.

6. Separately, the identifiers – which will be needed to re-identify a person in specific circumstances – are also securely fed into the CADRE database and stored in a distinct environment which will never be accessible to researchers.

7. A researcher sends a request to use relevant data for a project, based on a specific research question.

8. Access to the de-identified database will be granted to researchers under very specific circumstances through a screening process.

9. If the project is approved, the researcher is given limited access those areas of the de-identified database they need for their project and given training on how to use it properly.

10. Approved researchers, to further their understanding, will search the database for de-identified records meeting their inclusion criteria to request re-identification. The consent of the child or their parent/guardian will be sought before the researcher can view the child’s clinical records and contact the family.

The diagram below illustrates the difference between clinical records and the research data in CADRE

We use the Five Safes framework, which is a set of principles that allows data services to provide safe research access to data. The framework is considered best practice in data protection and is used by a range of other similar databases across the UK including Health Data Research-UK (HDR-UK) and the National Institute for Health Research Design Service (NIHR). Find out more about the Five Safes framework. The principles are described below.

The Five Safes

1. Safe data: data is de-identified to protect patient confidentiality.
2. Safe projects: research projects are approved by the data access committee for the public good.
3. Safe people: researchers are trained and authorised to use data safely.
4. Safe settings: a SecureLab environment prevents unauthorised access or use.
5. Safe outputs: screened and approved outputs that do not disclose personal data.

There’s more information on the Understanding Patient Data website.