GDPR in Research

All NHS organisations are expected to support and endorse health and care research in the public interest and for the benefit of society as a whole. This forms the legal basis for NELFT to lawfully collect personal information and data for the conduct of research.

The NIHR recognises that the sharing of research data must:

  • Protect the confidentiality and privacy of individuals
  • Respect the terms of consent by individuals who are involved in research
  • Be consistent with relevant legal, ethical and regulatory frameworks
  • Guard against unreasonable costs

The NIHR also promotes openness and transparency in research through a number of its policies, guidance and platforms. More information can be found here

What are your rights as a research participant?

The General Data Protection Regulation (GDPR) came into force on 25th May 2018 and outlines operational guidance for researchers and study coordinators on the implications of GDPR for the delivery of research in the UK. GDPR outlines the rights individuals have within health research in the following areas:

  • The right to erasure
  • The right to access by the data subject
  • The right to rectification
  • The right to restrict processing
  • The right to object to processing

Participants rights can be varied depending on the type of research study they are participating in. GDPR allows exemptions to these rights as long as safeguards are in place. More information can be found here

When you take part in research at NELFT, we have a duty to comply with the UK Policy Framework for Health and Social Care Research, GDPR and the legislation and principles of Informed Consent and Good Clinical Practice. These ensure the management and conduct of health research at NELFT, to protect and promote the interests of patients, service users and the public.  

You can find more information about data protection and information governance here