Who are we?
The Intensive Care National Audit & Research Centre (ICNARC), based in the UK, is the sponsor and data controller for the study.
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 name, date of birth, NHS number, health data and contact details) was collected by the research team at the hospital where you 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.
What do we do with your information?
ICNARC will follow-up on your well-being 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 65 Trial team will send your name, date of birth, home postcode, NHS number and unique trial number (required to ensure you can be identified in the database correctly) to NHS Digital using a secure password protected online file exchange service. An authorised person from NHS Digital will then link the identifiers to the national records and securely send back the relevant data for storage on the secure 65 Trial database.
We will also use these data to send you a questionnaire on your health and well-being 90 days and one year after you were entered onto the study.
All of the information is held in a secure password protected database, with access only by authorised research team members at your hospital and at ICNARC.
Information collected during the 65 Trial 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/).
How long do we keep your information for?
At the end of the study, ICNARC will keep identifiable information about you for five years 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.
Your rights over your information
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. To safeguard your rights, we will use the minimum personally-identifiable information possible.
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 this purpose. 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. As you were very unwell at the time, a relative, close friend or an independent consultee may have provided their opinion, on your behalf. In either situation, you can opt out if you no longer wish that we process your data in these way (contact details below).
More information about the 65 Trial is available on this website. If you have any other questions or wish to opt out, please contact:
Alvin Richards-Belle Trial Manager Alvin.Richards-Belle@icnarc.org 020 7269 9277
Paul Mouncey Chief Investigator Paul.Mouncey@icnarc.org 020 7269 9277
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