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Detailed guide: NHS population screening: data requests and research

Public Health England

February 18
16:52 2021

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

You should refer to the NHS population screening: data and research application process flowchart (PDF, 177KB, 1 page) if you need:

  • to access screening data for research, evaluation or audit
  • permission to approach individuals identified through screening
  • direct access to screened individuals

The research advisory committee (RAC) team are the main point of contact for researchers and are responsible for helping them through the application process. This process can be summarised as:

  1. Submit research application by email to screening.research@phe.gov.uk.
  2. Application reviewed at programme-specific RAC if required.
  3. If the application is requesting access to PHE data it will be reviewed by the PHE Office for Data Release (ODR).

Each of the young person and adult screening programmes has its own RAC:

The antenatal and newborn screening programmes are grouped together into one RAC:

Terms of reference

See NHS population screening programmes: research terms of reference for guidance on RAC aims and objectives, legal issues, ethical issues and membership.

Committee activity and previously approved projects

All projects that have received full approval from a RAC are listed on the register of RAC approvals. The RACs also publish an annual summary of activity showing the number of applications received and the outcome of decisions.

All personally identifiable or de-personalised data releases for projects approved by the RACs are listed on the PHE ODR release register, which is updated quarterly.

Published 19 July 2018
Last updated 18 February 2021 +show all updates
  1. Changes to text and links added to RAC approved projects page and data release register.

  2. Added links to Diabetic eye screening: submitting research proposals and Antenatal and newborn screening: submitting research proposals.

  3. Added link to new bowel cancer screening research guidance publication.

  4. First published.

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