Information governance

Why we collect data and how we handle it

Information governance is a means of ensuring that all data, including personal information, is handled in line with relevant legislation, guidance and evidence-based practices.

The National Care Experience Programme is committed to using the information that it collects in a manner that is fair, secure and respects the privacy of the survey participants. Our statements of purpose and information practices explain why we collect information, and how we process and handle this data. Our data protection and confidentiality policy describes how we protect survey respondents’ privacy.

Statement of purpose (PDF)

Statement of information practices (PDF)

Data protection and confidentiality policy (PDF)


Privacy impact assessment

We conduct regular Privacy Impact Assessments to evaluate the security and privacy risk for the surveys that we conduct.

Summary report 2019 (PDF)

Summary report 2018 (PDF)

Summary report 2017 (PDF)


Data retention

Personal data collected to administer the survey will be deleted once all surveys have been sent out and all responses have been processed. By not keeping data for any longer than required, the National Care Experience Programme complies with the Data Protection Act 2018 and the European Union General Data Protection Regulation (GDPR).

The schedule for the destruction of data collected by the National Care Experience Programme is outlined below. The survey responses are anonymous and may therefore be retained indefinitely.


Record retention and destruction schedule

This section outlines the retention and destruction schedule for all data collected as part of the National Care Experience Programme.

  1. Personal data (collected to administer the survey): Destroyed six weeks after the survey closes
  2. Hard-copy survey responses: Destroyed two months after the survey closes
  3. Survey codes: Destroyed two months after the survey closes
  4. Survey responses: Anonymised survey responses are retained indefinitely by HIQA

Data access

Personal data

To make a data subject access request, please click below.
Request personal data

Research data

To request access to anonymised data for research purposes, please click below.
Request data for research