P0304

P0304 - Hospital Frailty Risk Score (HFRS) in End Stage Kidney Disease (ESKD) - Privacy Notice

Principal Investigator: Dr Andrew Mooney, Leeds Teaching Hospital Trust

About the study

Previous work with Connected Bradford has shown that frailty scores are a powerful predictor of survival for patients undergoing dialysis treatment for Chronic Kidney Disease (CKD).

In this work we aim to test this hypothesis using secondary care frailty scores. This can help clinicians tailor treatment to the individual and offer palliative care support where required at the earliest possible opportunity.

Pseudonymised data from Leeds Teaching Hospital Trust will be used to understand the impact that the Hospital Frailty Risk Score has on survival after dialysis has been started for CKD. Unfortunately, despite the intrusive nature of dialysis treatment, many patients do not survive beyond the first few months: knowing this in advance can help patients make more informed choices around their treatment regime.

Privacy Notice

Summary

Data from the Renal Department of Leeds Teaching Hospital Trust (including patient demographics, dialysis treatment details, and other related diseases) will be transferred to the University of Leeds for analysis. All data is pseudonymised: names, addresses, NHS numbers, etc. are removed so that the researchers cannot identify individuals.

Data will be stored and analysed securely within a secure computing environment, with access limited to the project team. All data will be deleted at the end of the project. More detail, and contact information for any queries, can be found below.

Where do we obtain data from?

This study uses data obtained from Leeds Teaching Hospital Trust (LTHT). All data is pseudonymised by LTHT staff, so that the researchers cannot identify individual patients. The data contains information on the demographics, start date of dialysis, comorbidities required to calculate the Hospital Frailty Risk Score, and the date of death, if applicable.

What data do we hold?

The data does not contain patients’ names, addresses, phone numbers, or NHS numbers. It contains the demographics, start date of dialysis, comorbidities required to calculate the Hospital Frailty Risk Score, and the date of death, if applicable.

These data do include a unique identifier which, if combined with data held by the various data controllers, would allow identification of an individual and therefore these data are classed as ‘personal data’ under the General Data Protection Regulation (GDPR). The researchers do not have access to the necessary data to identify individual patients.

Who will process my personal information?

The data will only be accessed by university employees funded by the project, and only used for the purpose of this project. Only summarised and aggregated data will be disseminated in the form of academic presentations, peer-reviewed journals and lay summaries. The data will not be used for commercial purposes, provided in record level form to any third party or used for any direct marketing. There will be no requirement or attempt to re-identify any individuals within the data.

There will be no transfers of the data to third countries or international organisations, and there will be no automated decision making or profiling in use with these data.

What is the purpose and legal basis of the processing?

Under the General Data Protection Regulation (GDPR), the University of Leeds has to identify a legal basis for processing personal data and, where appropriate, an additional legal basis for processing special category data.

As a publicly funded organisation, the University of Leeds processes personal data to undertake scientific research which is in the public interest (further details here: https://dataprotection.leeds.ac.uk/wp-content/uploads/sites/48/2019/02/Research-Privacy-Notice.pdf). The legal basis for processing data is under Article 6 (1) (e) of the GDPR: Processing is necessary for the performance of a task carried out in the public interest. Special category data is processed under Article 9 (2) (j): Processing is necessary for archiving purposes in the public interest, or scientific and historical research purposes or statistical purposes.

How will you keep my data secure?

The data controller for this study is Leeds Teaching Hospital Trust, who send the pseudonymised data to the University of Leeds. The University has in place appropriate technical and organisational measures to protect your personal data and/or special category data.

Information will be treated confidentially. The University is committed to the principle of data protection by design and default and uses the minimum amount of data necessary for the project.

How can I access my personal information?

Various rights under data protection legislation, including the right to access personal information that is held about you, are qualified or do not apply when personal information is processed solely in a research or archival contact. This is because fulfilling them might adversely affect the integrity of, and the public benefits arising from, the research study or project.

The full list of (qualified or inapplicable) rights is: the right to access the personal information that is held about you by the University, the right to ask us to correct any inaccurate personal information we hold about you, to delete personal information, or otherwise restrict our processing, or to object to processing (including the receipt of direct marketing) or to receive an electronic copy of the personal information you provided to us.

If you have any questions regarding your rights in this context, please use the contact details below. Please note as we do not hold names or addresses for this study we cannot remove participants from this study, correct any information we hold about you or provide you with an electronic copy of the personal information we hold about you.

How long is my information kept?

The datasets are kept for the length of the project, and are then archived for 23 months to ensure all work is complete and any corrections can be handled. After this, the data is securely and permanently deleted.

Who can I contact?

If you have any questions about this research study, please contact the principal investigator Dr Andrew Mooney (andrew.mooney2@nhs.net).

If you have any general questions about how your personal information is used by the University, or wish to exercise any of your rights, please consult the University’s data protection webpages. If you need further assistance, please contact the University’s Data Protection Officer (Alice Temple: A.C.Temple@leeds.ac.uk).

Our general postal address is University of Leeds, Leeds LS2 9JT, UK.

Our data controller registration number provided by the Information Commissioner’s Office is Z553814X.

How can I complain?

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

This notice was last updated on 5th September 2022.