POPPI Trial – Privacy policy
We would like to thank you for taking part in the POPPI Trial. The POPPI Trial was a clinical trial to find out if training intensive care unit staff to deliver psychological support to patients improves patients’ well-being after a stay in the intensive care unit and whether this is beneficial for the NHS. This study was funded by the National Institute for Health Research – Health Services and Delivery Research Programme.
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 collected 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.
What do we do with your information?
ICNARC followed-up on your well-being by requesting some important health information, including survival and GP practice code (a code that identifies which GP practice you are registered with) 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 POPPI Trial team sent your 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 then linked the identifiers to the national records and securely sent back the relevant data for storage on the secure POPPI Trial database.
We also used these data to send you a questionnaire on your health and well-being six months’ after you consented to take part in 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 POPPI Trial is stored on ICNARC's secure servers which are owned by an authorised contractor called Exponential-e (https://www.exponential-e.com/). 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
How long do we keep your information for?
At the end of the study, ICNARC will keep identifiable information about you for ten years after the study has finished. The information will then be 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. 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.
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. Withdrawing or opting out of the study will not affect your care received or any future care.
More information about the POPPI Trial is available on this website. If you have any other questions, wish to opt out or withdraw consent, please contact:
Alvin Richards-Belle Trial Manager Alvin.Richards-Belle@icnarc.org 020 7269 9277
Paul Mouncey Head of Research Paul.Mouncey@icnarc.org 020 7269 9277
ICNARC's overarching Privacy Policy, and details of our Data Protection Officer, is 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.
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
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
POPPI Trial – Privacy Policy v6.0, 9 June 2022