NHS population screening: data requests and research
Role and remit of NHS population screening programmes’ Research, Innovation and Development Advisory Committee
Applies to England
NHS England (NHS E) is responsible for the NHS screening programmes’ functions, including the Screening Research Office. The remit of the Screening Research Office is to enable and broaden innovation and development to screening programmes. Each screening programme has an Expert Reference Group (ERG), formerly known as the Research Innovation Development Advisory Committtees (RIDACs). The role of the ERG is to review applications for research and data for screening programmes and assess the impact of risk against the screening programme pathway.
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 protect 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.
Studies in Progress
Before you consider a study on a screening programme in England, check the Screening Research Office log of already approved studies: . These studies have been assessed by the NHS England former RIDAC and are currently underway in England.
Research and Innovation Needs Assessments
The NHS England Diabetic Eye Screening (DES) Programme has undertaken a Research and Innovation Needs Assessment (RINA). The RINA provides a structured, evidence-based approach to identify where R&I can most effectively improve outcomes, equity, and efficiency in the NHS DES programme.
If you would like to gain more information on the priorities for NHS England Diabetic Eye Screening Research, visit the published report and priorities for research within the programme.
The Screening Research Office is currently evaluating the NHS Diabetic Eye Screening RINA and will be carrying out further RINA’s for the remaining screening programmes.
Application process
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 the Screening Research Office.
To make an initial application, complete the NHS Screening Programme Research Impact Assessment.
Following assessment, applicants who require NHS England data will be asked to submit a Data Specifications for review by the Screening Data teams before going on to apply for Screening Data release.
For amendments to current studies, complete the NHS England Screening Research Office Application Amendment Form.
Guidance on completing the NHS Screening Programme Research Impact Assessment form can be found here:
Updates to this page
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Updates including changes of terminology (use of Screening Research Office and Expert Reference Group rather than RIDAC); updated application process; additional information added on studies in progress and Research and Innovation Needs Assessments.
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Updated call-out box at top of page to include information on data and research applications.
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Updated RIDAC application form and data application form
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Removed out of date application form.
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Added statement about impact of Public Health England's functions moving to new organisations on 1 October.
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Changes to text and links added to RAC approved projects page and data release register.
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Added links to Diabetic eye screening: submitting research proposals and Antenatal and newborn screening: submitting research proposals.
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Added link to new bowel cancer screening research guidance publication.
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First published.