Fair data processing

For participants

We would like to thank you for taking part in the POPPI trial. You are one of 1,458 participants taking part in this important research.

The POPPI trial is funded by the National Institute for Health Research, Health Services & Delivery Research Programme. The Data Controller for the POPPI trial is ICNARC.

The POPPI trial collects information (data) about you to address the objectives of the trial, and we wish to clarify what we do with the data.

Identifiable information about you is held by the POPPI team at ICNARC. This information (such as your name, date of birth, NHS number and contact details) was collected from your medical records by the research team at your hospital, when you consented to take part in POPPI. All of this information is held securely in a password protected database.

All participants’ are contacted six months later with a questionnaire to find out how they are doing with their health and well-being. Information held by NHS Digital (Medical Research Information Service Database Administrative System (MIDAS) an electronic database of NHS patient demographic records) may be given to the POPPI team at ICNARC and be used to provide information about your current status; only if you have given ICNARC your consent to do so NHS Digital is the new name replacing the previous organisation name the Health and Social Care Information Centre.

To obtain this information from NHS Digital, your date of birth, postcode, NHS number and trial number will be provided in a spreadsheet on one occasion to NHS Digital. NHS Digital will then link these identifiers to national death records and send back a spreadsheet confirming the latest status for each patient, and if relevant, date of death. NHS Digital will provide this information to ICNARC monthly while the POPPI trial is ongoing. Updated information will then be added to the secure POPPI trial database to ensure no contact is attempted with patients who have passed away.

In addition, NHS Digital will also provide the GP code field. This is a code that identifies your registered GP practice. Where a participant has not responded to the follow-up questionnaire, the POPPI trial team will contact the patient’s GP practice to confirm or update contact details. The GP code will be used by the POPPI trial team to enable the participant’s GP practice to be identified rapidly, and ensure follow-up is completed timely.

We will only obtain information from NHS Digital if you have agreed for us to do so when you consented to take part (you will have written your initials on the relevant line of the Consent Form). However, you can always opt out if you no longer wish that we link your data obtained for the POPPI trial with data held by NHS Digital. If you would like to opt out, please contact one of the team using the contact details at the bottom of this page.

At the end of the trial, ICNARC will anonymise any identifiable information (unless you have agreed otherwise) and this information will be kept for a minimum of 10 years.

Researchers from ICNARC who will analyse your data in late-2017 will only know your unique trial 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.

Information collected during the POPPI trial is stored on secure servers at ICNARC (office in London) or servers owned by an authorised contractor Red Technology. 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).

More information about the POPPI trial is available on this website. If you have any other questions, please contact:

Alvin Richards-Belle, Trial Manager: Alvin.Richards-Belle@icnarc.org  020 7269 9277; Or

Paul Mouncey, Senior Researcher: Paul.Mouncey@icnarc.org 020 7269 9277.