For parents & guardians

The Intensive Care National Audit & Research Centre (ICNARC) are sponsoring and managing this study. We are based in the UK and are the data controllers for the study, responsible for looking after your and your child’s information and using it properly

To help us manage, and meet the objectives of, the study – ICNARC collects and holds personal data about you and your child (and other participants). This information (such as your child’s name, date of birth, NHS number, some health data and your name and contact details) was collected by the research team at the hospital where you became involved in the study. This information was securely submitted to ICNARC. The research team will also collect information on your child’s treatment and wellbeing from their medical records until the end of the study. 

No health and care data are stored on mobile devices or removable media. All data are stored on servers held in ISO27001:2013-certified data centres and accessed over a secure, encrypted VPN. Web interfaces are covered by an SSL enterprise certificate (2048bit key, providing 256-bit encryption)

ICNARC will follow-up on your child’s wellbeing by requesting some important health information, including survival and hospital stay data, from a national database held by NHS Digital (an organisation that manages access to a database of NHS records). To obtain this important information, the Oxy-PICU study team will send your child’s name, date of birth, home postcode, NHS number and unique trial number (this identifiable information are required to ensure your child is correctly identified in the database) to NHS Digital using a secure password protected online file exchange service. 

An authorised person from NHS Digital will then ‘link’ the identifiable information to the national NHS records. NHS Digital will then securely send the pseudonymised survival and hospital stay datato ICNARC for storage on the secure Oxy-PICU study database. ICNARC will then share some of the pseudonymised data with a member of our team at the London School of Hygiene and Tropical Medicine, who will help with some of the analysis of the trial. 

All of the information is held in a secure password-protected database, with access only by authorised research team members. People who do not need to know who you or your child are will not be able to see any identifiable information – your data will have a code number instead. 

One year after you became involved in the study, we will use your name and contact details to send you a questionnaire to find out how your child is doing. If you opted to receive the questionnaire by email, then we will send you a link to the questionnaire using SmartSurvey. SmartSurvey’s privacy policy can be found here.

Information collected during Oxy-PICU 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

At the end of the study, ICNARC will keep identifiable information (personal data) about you and your child for no longer than one year after the study has finished. The information will be then anonymised so that you can no longer be identified (unless you have agreed otherwise). It will not be possible to identify any person who has taken part in the study in any reports or articles

ICNARC process data for this study under the legitimate interest legal basis. This is because ICNARC is a registered charity and the data processing described here is to support scientific and statistical research. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained, unless you request otherwise. To safeguard your rights, we will use the minimum personally-identifiable information possible. There is no automated decision-making or profiling. 

If, when you consented to take part, you indicated that you did not want us to either obtain the above information from NHS Digital or to send you questionnaires, we will not process your data for these purposes. If you agreed for us to keep your contact details on file after the study ends, we may contact you if we feel you or your data could contribute to other important health questions.  

You can opt out at any time, without giving a reason, if you no longer wish that we process your data in these ways (contact details below). 

More information about the Oxy-PICU study is available here. If you have any other questions or wish to opt out or withdraw, please contact: 

Irene Chang         Trial Manager       Irene.Chang@icnarc.org             020 7269 9277

Marzena Orzol     Trial Manager       Marzena.Orzol@icnarc.org         020 7269 9277

ICNARC’s overall Privacy Policy, and details of our Data Protection Officer, are available here.  Where your rights are different for individual research studies compared to the ICNARC privacy policy, the individual research study privacy policy takes priority

If you have a complaint about our use of your information, you can contact the Information Commissioner’s Office via their website or write to them at: 

Information Commissioner’s Office
Wycliffe House, Water Lane
Wilmslow
Cheshire
SK9 5AF