Hospitalisation and Mortality after Acute Myocardial Infarction: Privacy Notice

Hospitalisation and Mortality after Acute Myocardial Infarction: Privacy Notice

Principal Investigator: Dr Marlous Hall, University Academic Fellow and lead for the Survivorship and Multimorbidity Epidemiology Research Group.

About the study

Over the last decade, there has been a substantial and sustained decline in mortality rates from cardiovascular disease in the UK. Despite this, cardiovascular disease remains the biggest killer in the UK and someone is admitted to an NHS hospital with a heart attack every three minutes. Moreover, improvements in acute myocardial infarction (AMI; heart attacks) survival are likely to be a major cause for the increasing incidence of heart failure which affects around 900,000 individuals in the UK and accounts for 5% of all emergency hospitalisations. Presently, most patients with cardiovascular disease are elderly and because AMI survival has increased there are more patients living longer with co-morbidities. Moreover such patients frequently re-present to hospital escalating the burden of admissions following AMI.

Specifically, the purpose of this research is to quantify the burden of hospitalisations and long term outcomes for patients surviving AMI in England. The research output will provide NHS commissioners, clinicians and patients with the necessary evidence to allow for effective service provision and resource allocation, and to ensure high standards of quality of health care for the large number of patients who have survived AMI.

This study will use Hospital Episode Statistics (HES) data provided by NHS Digital. Please see full details of our privacy notice below.

Privacy Notice

Where do we obtain data from?

This study uses information from Hospital Episode Statistics (HES) data which is provided by NHS Digital. It is data about admissions at NHS hospitals in England. This data is collected during patients’ time at hospital and is collated centrally to allow hospitals to be paid for the care they deliver. HES data is designed to enable other non-clinical uses, such as research into aspects of NHS care. More information is available on the NHS Digital website (https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics).

For those patients who have died we also have data about their death from the Office for National Statistics national registration data. These data are also supplied by NHS Digital.

What data do we hold?

The data does not contain patients’ names, addresses, phone numbers, NHS numbers, or records from primary care. It contains the month and year of a patients’ admission to hospital, the diagnoses and clinical procedures carried out during their hospital stay and the month and year of birth but not the full birth date. The death record data contains the length of time in days from admission to hospital to the date of death – but not the date of death itself.

These data do include a unique identifier, which if combined with data held by NHS Digital would allow identification of an individual therefore these data are classed as ‘personal data’ under the General Data Protection Regulation (GDPR).

Who will process my personal information?

The data will only be accessed by substantive employees of the University of Leeds 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 (in line with the HES analysis guide). 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 controllers for this study are 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?

Although the analyses conducted by the Cardiovascular Epidemiology Research Group cannot identify any individual from the HES data provided to it by NHS Digital, it takes great care in protecting the HES data. The research team is subject to strict contractual standards imposed by NHS Digital, as the data provider.

As contractually required, HES data is not kept for longer than the length of the research study and is then securely destroyed.

Who can I contact?

If you have any questions about this research study, please contact the principal investigator Dr Marlous Hall via m.s.hall@leeds.ac.uk.

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 postal address for data protection issues is University of Leeds Secretariat, Room 11.72 EC Stoner Building, Leeds, LS2 9JT. Our telephone number is +44 (0)113 2431751.

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 22nd October 2020.