Who can access the data? 

Approved researchers will be allowed to use the data for ethically approved projects such as clinical trials, population studies and health service improvement studies, as well as for developing digital innovations using artificial intelligence (AI) and machine learning. Researchers will be able to access the data in one region or apply to access data across a range of regions, using privacy preserving federated analytics technology. More details here. This is a key difference between CADRE and other linked data resources

The data access request process 

The CADRE Data Access Committee will ensure that only high-quality projects that can clearly show how they intend to benefit young people’s health are allowed to use the data. Researchers must be from a trusted organisation and have the right qualifications to analyse and interpret health data.
Researchers will go through a screening process by filling an application form detailing why they need access to the database, the specific required datasets, and how their project will improve young people’s health or well-being.

They will need to submit their form and explain to the Data Access Committee consisting of experts in the research area, experts in research methods and ethics and patient and public representatives. The form asks for details such as:
-What their project involves
-How it will help children and young people
-How they’ll be carrying out their research
-What data they need to be able to access.

Researchers must also:

a.Hold a contract with one of the partners providing data to CADRE;
b.Have had appropriate information governance training within the last 12 months;

What kind of individuals can access the data?  

Researchers will need to be sponsored by one of the organisations who are data controllers in CADRE. They could be employees of one of the NHS Trusts or local authorities taking part in CADRE, but they might also be analysts from companies who are doing research for public good (for example, a pharmaceutical company carrying out a trial of a new drug, or a technology company developing a new digital psychological therapy), as long as one of the CADRE organisations is happy to support the project.

All projects go through the same rigorous approval process, no matter which organisation is sponsoring or taking part in the study and whether it is commercially funded. In all cases, the project leads will have to show that the project is for the public benefit.

All the relevant relationships, and any potential conflicting interests or restrictions, must be detailed in the data access request form.

Information for researchers 

Researchers will be able to submit a request to access data for the purpose of conducting research to improve healthcare services for children and young people, using a data access request form. They can ask to access de-identified patient-level data within one region, or they can request access to anonymous data across several regions, using CADRE’s federated analytics function.
Researchers will only be granted access to the data necessary to conduct their specific research project, and all data within CADRE has been de-identified. A data access committee will decide whether to approve each request. The committee will evaluate each application based on its benefits, risks, scientific merits, and ethics before deciding.
Once a data access request is approved researchers will have to complete database training.
Researchers will have certain responsibilities for public involvement and transparency, such as summarising their study findings and what they mean for young people in Plain English.