For patients

This Privacy Notice is intended to provide information for patients and their family members whose information may be used for the ICNARC Audit: Family Satisfaction Audit. It explains what type of information we collect, why we collect it and what we do with it.

This Privacy Notice was last updated on the 02/08/2023. We will update this whenever we change the type of processing we carry out.

We are the Intensive Care National Audit and Research Centre (ICNARC), an independent registered charity (charity number: 1039417)

For the Family Satisfaction Audit we collect and process information relating to patients and their family members.

For family members, we collect questionnaire responses about their experience of their family members  stay in the participating intensive care unit (ICU) using the Family Satisfaction with Care in the Intensive Care Unit (FS-ICU-24) questionnaire and demographic information (age, gender, relationship to the patient and ethnicity).

For patients, we collect their Case Mix Programme admission number (a number assigned to each patient admitted to an ICU which allows us to identify them within the Case Mix Programme national clinical audit which is also held by ICNARC) and the date of admission to ICU. This personal information is then used to combine with demographic information about the patient (age, sex and dependency prior to ICU admission) and their ICU admission (illness severity, treatment received in ICU, length of stay in ICU and ICU outcome) with the questionnaire responses provided by their family member.

Questionnaire responses will be linked to the corresponding CMP admission number of the patient/family member. This is in order to allow us to take into account how patient factors may affect the standards of care received

The personal data provided by the family member includes:

  • Questionnaire responses using the FS-ICU-24 questionnaire
  • Demographics information (age, gender, relationship to the patient and ethnicity)

Personal data about the patient, provided by the participating ICU and obtained from the Case Mix Programme national clinical audit includes:

  • Demographics information (age, sex and dependency prior to ICU admission)
  • Information about the patients ICU stay (illness severity, treatment received, length of stay and ICU outcome)

The purpose of the Family Satisfaction Audit is to evaluate family satisfaction in ICU and to provide a report detailing family satisfaction with ICU care at the participating unit. The report provides the unit with their overall family satisfaction score in relation to other participating units and taking into account patient factors and identifying potential areas for improvement. The aim of the audit is therefore to facilitate quality improvements at participating units

We may share your personal information with the following third parties during the course of our activities:

If you are a family member who has accepted the invitation to complete a questionnaire, you have the option of completing the questionnaire on paper (and returning to ICNARC) or online using SmartSurvey. SmartSurvey’s privacy policy can be found here.

All questionnaires are returned (on paper or online) to ICNARC and the information is held in a secure password protected database, with access only by authorised staff members at your hospital and at ICNARC. Information collected during Family Satisfaction Audit is stored on ICNARC’s secure servers which are owned by an authorised contractor called Exponential-e. ICNARC takes steps to ensure this information is not lost and makes regular back-ups of the data. ICNARC also contract Babble Cloud who provide external desktop and network managed services, including end user and infrastructure support. Employees at Babble Cloud will not access the data, however, they do have remote access to ICNARC servers

The legal bases for collecting and using personal data are:

  • ICNARC processes your personal data for the purposes of the audit, provided via the questionnaire. under our legitimate interest of supporting improvements of standards in intensive care as part of our purposes as a charity and under our articles of association. Namely, the advancement of education about the organisation and practice of intensive care, in particular through the promotion of audit and research into intensive care and the publication of the useful results of such audit and research.’
  • The ICNARC processes special category data under the basis of public interest in the area of public health. The aim of the audit is to improve the clinical standards of care within Intensive Care Units by reporting on the experiences of family members of ICU patients

The special categories of personal data we collect includes:

  • Ethnic origin
  • Health data

Case Mix Programme data is collected with approval from the Confidentiality Advisory Group under Section 251 of the NHS Act 2006

Electronic patient and organisational information (such as databases, questionnaires or health records etc) are kept on secure servers and only authorised ICNARC staff have access to patient identifiable data. Access to your personal data is password-protected and our servers are regularly monitored for possible vulnerabilities and attacks.

ICNARC holds all records that are supplied by NHS organisations in the strictest confidence. All staff adhere to our internal policies and procedures and are regularly trained in data protection

The Questionnaire response you send to us will be securely deleted 6 months after reporting the pseudonymised findings back to the unit.

The specific retention requirements for health and care records are listed in the Records Management Code of Practice for Health and Social Care 2021 in its detailed retention schedule

Subject to certain conditions, you have the following rights in relation to your personal data:

  • Right of access – you have the right to request a copy of the information that we hold about you
  • Right of rectification – you have a right to correct data that we hold about you that is inaccurate or incomplete
  • Right to erasure – in certain circumstances you can ask for the data we hold about you to be erased from our records
  • Right to restriction of processing – where certain conditions apply to have a right to restrict the processing
  • Right of portability – you have the right to have the data we hold about you transferred to another organisation
  • Right to object – you have the right to object to certain types of processing such as direct marketing
  • Right to object to automated processing, including profiling – you also have the right to be subject to the legal effects of automated processing or profiling

The Data Protection Officer at ICNARC is Scott Carnegie. Further information is available by emailing DPO@icnarc.org  or by contacting the office on 0207 7831 6878.

In the event that you wish to make a complaint about how your personal data is being processed by ICNARC, or how your complaint has been handled, you have the right to lodge a complaint with ICNARC’s Data Protection Officer (above) or directly with the supervisory authority: .

Supervisory authority contact details

ICO – Information Commissioner’s Office

Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
https://ico.org.uk/global/contact-us/
Tel: 0303 123 1113