P0329 - IMPACT-MI
Privacy Notice: P0329
Study Title
An Investigation into Multimorbidity Prevalence and its Association with Clinical outcomes and Treatment effectiveness in Myocardial Infarction (IMPACT-MI): a matched cohort study using linked primary and secondary care data.
About the Study
As we get older, we become more likely to develop multiple long-term health conditions, which is referred to as ‘multimorbidity’. As a result of people living for longer and improvements in medical care, more people that have a heart attack (also known as a ‘myocardial infarction’) will have multimorbidity. This is a problem because patients with heart attacks receive specialist care from expert heart clinicians that may not be equipped to care for patients with multiple, non-heart-related conditions. In addition, heart attack treatments were developed in clinical trials for heart attack patients without multimorbidity, so we do not know how well they work for patients with multimorbidity.
This study aims to use anonymous GP and hospital records to find out what effect multimorbidity has on heart attack treatment and outcomes. We hope to use this information to find ways to improve how patients with heart attacks and long-term conditions are cared for. We will look at the number of patients that have multiple long-term conditions at the time of a heart attack and how this has changed over time, find combinations of conditions that may lead to worse outcomes, and study the safety and effectiveness of heart attack treatment for people with multiple long term conditions. The results of this study will enable doctors to provide more tailored and effective medical care after a heart attack, taking into account the other long-term conditions a person has.
Where do we obtain data from?
This study uses anonymised data from the Clinical Practice Research Datalink (CPRD), Hospital Episode Statistics (HES) and Office for National Statistics (ONS). The CPRD contains details of diagnoses, referrals, prescriptions and tests performed in primary care, collected from patient record systems in a large sample of GP practices. The HES data contains details of the diagnoses and treatments a patient receives during a hospital admission in England. The ONS provides data about the level of socioeconomic deprivation in the general area in which a person lives. For patients that have died, the ONS also provide information about their date and cause(s) of death, based on national death registration data.
Data from these sources is linked, minimised and securely anonymised by CPRD, prior to being provided to researchers at the University of Leeds. More information about the data sources and linkage methods is available on the CPRD website (https://www.cprd.com/).
What data do we hold?
The data does not contain any patient identifiers such as patient name, address, NHS number, phone number or free text medical notes. It contains the year of birth, but not the exact date. The death record data contains the date and cause(s) of death.
It is not possible to identify an individual patient using the data that will be stored by the University of Leeds during this study. However, these data do include a unique field, which if combined with data held by CPRD could allow identification of an individual. As a result, these data are classified as ‘personal data’ under the General Data Protection Regulation (GDPR).
Who will process my personal information?
Only substantive researchers based in the Leeds Institute for Data Analytics (LIDA) at the University of Leeds will process your data for the purposes of this project. We will not share the individual-level data used for this study with anyone else.
Only summarised and aggregated data will be reported, in the form of academic presentations, peer-reviewed journals and lay summaries, in line with CPRD requirements. The data will not be used for commercial purposes, provided to any third party or used for direct marketing purposes. There will be no attempt to re-identify any individuals within the data.
There will be no transfers of the data to other countries or international organisations, and these data will be not be used for automated decision making or profiling.
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. The legal basis for processing data is 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 the University of Leeds. The University will put in place appropriate technical and organisational measures to protect all personal 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.
The data will be stored and accessed through the Leeds Analytic Secure Environment for Research (LASER), which meets all current information governance and data security standards. More details about LASER are available at: https://lida.leeds.ac.uk/about-lida/leeds-analytic-secure-environment-for-research/.
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.
As we do not have access to or store personal identifiers (such as names or addresses) for the individuals included in this study, we are unable to remove participants, correct any information or provide you with an electronic copy of the personal information we hold about you.
If you have any questions regarding your rights in this context, please use the contact details below.
How long is my information kept?
Although the analyses conducted by the University of Leeds cannot identify any individual from the data provided to it by CPRD, it will take great care in protecting these data. The research team is subject to strict contractual standards imposed by CPRD, as the data provider.
As contractually required, CPRD, HES and ONS data will not be kept for longer than the length of the research study. These will then be 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 (https://dataprotection.leeds.ac.uk/). If you need further assistance, please contact the University’s Data Protection Officer (Alice Temple: a.c.temple@leeds.ac.uk).
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).
Our postal address for data protection issues is Secretariat, University of Leeds, Room 11.57 Worsley Building, Leeds, LS2 9JT. Our telephone number is +44 (0)113 343 7641.
Our data controller registration number provided by the Information Commissioner’s Office is Z553814X.
This notice was last updated on 8th February 2022.