Guidance

NHS population screening: data requests and research

Role and remit of NHS population screening programmes’ research advisory committees.

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 is 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 the release of any data that is not anonymous for research purposes or audits/service evaluations that cross organisational boundaries. See Guidance for CAG applicants for more information.

NHS screening programmes should 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 and evaluation coordinator is the main point of contact for researchers and is 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 research advisory committee (RAC) if required. See RAC aims and objectives.
  3. If required, application reviewed by PHE Office for Data Release (ODR). See ethical issues in terms of reference.

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:

  • Antenatal and newborn screening: guidance for research

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

Published 19 July 2018