Who are we?
The Intensive Care National Audit & Research Centre (ICNARC), based in the UK, is the Sponsor and data controller for the CIRCA study.
ICNARC holds the data for the Case Mix Programme (CMP) which is the national clinical audit for adult, general critical care units in England, Wales and Northern Ireland. The CMP includes intensive care and combined intensive care and high dependency units in the NHS and collects high quality data on patient outcomes for all adults that are admitted to a critical unit in the UK (more information about the CMP can be found here; link to: https://www.icnarc.org/Our-Audit/Audits/Cmp/About). As part of the CIRCA study we are using this existing high-quality data collected for the CMP to help answer the research question.
What Personal Data do we collect?
To help us manage, and meet the objectives of, the study - ICNARC collects and holds personal data about you (and other participants). This information (such as your date of birth, NHS number, and health data) is collected by the audit and research teams at the hospital where you were in intensive care and became involved in the study. The research team will also collect information on your survival from your medical records until the end of the study. This information is securely submitted to ICNARC.
What does the study involve?
This study involves collecting data on how often cardiac arrests occur in intensive care units (ICUs) in the UK and trying to identify what factors (if any) influence the patient outcomes after having a cardiac arrest whilst in ICU.
When you (and other participants) experienced a cardiac arrest whilst being treated in a participating ICU, a small amount of information about the incident was collected and securely submitted to ICNARC. The information collected is based on that collected for the National Cardiac Arrest Audit (NCAA) - which is also held by ICNARC, which routinely collects this information on patients who experience a cardiac arrest in other areas of the hospital. This information will then be combined with the CMP data already held by ICNARC in order to answer the study questions. To get a more comprehensive view of the long-term effects of cardiac arrest in the ICU, we will ‘link’ data collected as part of CIRCA and from the CMP together with the following national datasets that contain information about patient outcomes after leaving hospital:
• National Cardiac Arrest Audit (NCAA) which will tell us if patients go on to have additional cardiac arrests in other areas of the hospital after leaving the ICU, before being discharged home from hospital – held by ICNARC.
• Civil Registrations mortality data which will tell us about patients’ long-term survival – held by NHS Digital
Managing patient data securely
The process of ‘linking’ the information together from the individual databases to civil registrations mortality data will be done by NHS Digital (an organisation that manages access to a database of NHS records). To do so, authorised members of the CIRCA team at ICNARC will upload the date of births, sex, home postcodes, NHS numbers, and a unique study number (this is used as the common link between data sets) for each patient that is eligible for the study to NHS Digital. No patient names will be included in the dataset. This will be done using a secure, password protected online system. All of these pieces of information are sent to help ensure that we identify the right individuals in the other databases. An authorised staff member from NHS Digital will then link the data for each patient together from the different databases using the unique study number and return this to ICNARC where it will be stored securely.
Data linkage between CMP and NCAA national clinical audit datasets will also take place. As both datasets are held by ICNARC, this process will be conducted internally by authorised members of CIRCA team. The combined data will then be combined with the data from the civil registrations mortality dataset into a final dataset using the unique study numbers. At this point all identifiable data (i.e. postcodes, dates of admission/survival data, etc.) will be anonymised by an authorised member of the CIRCA team at ICNARC. The data in the final dataset will then be analysed to answer the study questions.
The final data set will not contain any patient identifiable information and will held by ICNARC (the data controller) for a minimum of 10 years. Only approved members of the CIRCA team from ICNARC will analyse the data and will only know the unique study number. The results of the study will appear in scientific journals and on this website. It will not be possible to identify any person who has taken part in the study in any reports or articles. No personal or identifiable information will be shared with anyone other than the NHS Digital.
The CIRCA study has received ethical [insert REC and REC reference] and Section 251 approvals [insert CAG reference] to undertake collect the small amount of information regarding the cardiac arrest and to link the routinely held datasets as described above. The CIRCA study processes data under Section 6(1)(f) and Article 9(2)(j) legal basis from the General Data Protection Regulation. This is because ICNARC is a registered charity and the data processing described here is to support scientific and statistical research.
Information collected for the CIRCA study is stored on secure servers at ICNARC (office in London) or servers owned by an authorised contractor Red Technology (http://www.redtechnology.com/). ICNARC takes steps to ensure this information is not lost and makes regular back-ups of the data using an authorised contractor (Disaster Recovery Service: http://securemediastorage.co.uk/).
Your rights over your information
If you have been treated in a hospital participating in the CIRCA study and would like to access, amend, erase or opt out of your personal data being used, you can 1. contact the health care team at the hospital where you were treated who will inform ICNARC or; 2. completing the Data Subject Request Form (click here), stating CIRCA as the research study and returning it to ICNARC.
For more information about CIRCA please contact:
Dr Matt Thomas (Chief Investigator) Matt.Thomas@nbt.nhs.uk
Dr Doug Gould (Senior Researcher) Doug.Gould@icnarc.org
Your right to complain
If you have a complaint about our use of your information, you can contact the Information Commissioner’s Office via their website at www.ico.org.uk/concerns or write to them at:
Information Commissioner's Office