NHS population screening: data requests and research

Purpose

The NHS screening programmes develop and improve as new information becomes available. This information can include:

• new tests
• a better understanding of conditions we screen for
• new ways to engage people in screening decisions

Screening programmes provide a unique opportunity for researchers to explore new tests, treatments and specific hypotheses relating to the screening programmes from a population perspective.

Data collection is integral to all screening programmes and a wealth of data is available to inform policy-making and research.

NHS screening programmes are responsible for ensuring data collected nationally and locally is managed in accordance with data protection and information governance requirements.

It is essential that research, evaluation and audit are feasible, of high quality and protects the safety of patients.

Any research activity must be undertaken in line with current legislation and guidance. Access to data sets comprising identifiable or potentially identifiable screening data or tests requires appropriate legal gateway assurances.

Approval from the NHS Health Research Authority (HRA) Confidentiality Advisory Group (CAG) is needed for some studies using identifiable data without consent. See guidance for CAG applicants for more information.

NHS screening programmes encourage well-designed research that addresses important new questions that will inform, guide and improve the programmes.

Application process

Applications for endorsement of research, evaluation or innovation activity involving screening service users or requiring access to data controlled by NHS England are all managed via england.screening.research@nhs.net

An initial application must be made using the RIDAC application form (MS Word Document, 127 KB). This will be reviewed by the relevant committee. Committees meet quarterly and applicants may be asked to attend.

Applicants who do not require access to NHS England data will then be asked to update the committee annually on the progress of their project.

Following RIDAC approval, any project requiring NHS England data must then submit a data application request using the Data Application Form (MS Word Document, 129 KB).  NHS England will review this application and, if approved, will agree an appropriate legal means to release the data with the applicant before a Data Sharing Agreement is drawn up. When this legal document is signed by both parties, the data release will be scheduled within the constraints of the NHS England digital work programme.

The full process from initial application to release of data may take several months, so applicants are advised to apply to the RIDACs early and be aware of the potential timeframe.

Terms of reference

See Terms of reference are being adapted at moment by each RIDAC)Reference for guidance on RIDAC aims and objectives, legal issues,and ethical issues and membership.issues.