Patients, carers and the public
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NICOR is responsible for a number of national clinical audits designed to improve the quality of care and outcomes of patients with heart disease. As the patient, the carer of a patient, someone you know who is cardiac patient or if you have a general interest in cardiac health, your thoughts and opinions matter.
Clinical audit is a quality improvement process. NICOR collects and analyses data to provide health professionals with information to help them to review the quality and outcomes of care against national standards and guidance. It is vital we learn about the needs and experiences of cardiac patients and the experiences of the families/friends and public, by involving you in why and how we collect, share and use health data for research. You can find the latest National Cardiac Audit Programme report.
The Annual Report is accompanied by supporting reports from six sub-specialties covered by the audit programme and a dedicated Annual Report for Patients, Carers and the Public, which was co-written by the NICOR Community Representative Group Chair, Sarah Murray, and patient representative Richard Corder and includes patient experiences during the COVID-19 recovery period.
NICOR does not offer clinical advice, but you can use our reports to find out what care you should expect, as a patient with heart disease, and to see how your local hospital compares to other hospitals in England and Wales.
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Why does NICOR collect my health information/data?
Patient data is vitally important for research. Access to patient data has helps important discoveries in fighting heart disease and many other illnesses. NICOR takes data protection extremely seriously. We comply with both the Data Protection Act 2018 and the General Data Protection Regulation (GDPR).
Our audits collect identifiable information to assess the outcome of different treatments and care providers. Each patient in our audits has a unique patient identifier so that their records of treatment can be linked to subsequent date of death, even though this will often be years in the future. This allows lessons to be learnt and patient care to improve over time – the procedures that give the best survival can be promoted, and care providers which have significantly poorer outcomes can be identified.
For more information, visit our Information Governance page.
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How does NICOR protect my health information/data?
All of the audits managed by NICOR have Section 251 approval, which means NICOR can use patient identifiable data, without patient consent. Our applications for approval were reviewed by the NIGB Ethics and Confidentiality Committee.
Section 251 of the NHS Act 2006 allows the use of confidential patient information in medical research when it is not possible to use anonymised information and when seeking consent is not practical. Section 251 will continue to be required until the processes to link data in pseudonymised form are properly developed within the NHS.
For more information, visit our Information Governance page.
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What is a patient registry?
A patient registry is an organised system for collecting data about a population defined by a particular disease, condition, or treatment. Studies derived from patient registries provide a real-world view of clinical practice, patient outcomes, safety, and comparative effectiveness and cost-effectiveness.
NICOR collects patient data and produces analysis, enabling hospitals and healthcare improvement bodies to monitor and improve the quality of care and outcomes of cardiovascular patients. It aims to enhance the care of patients by systematically reviewing medical practice against explicit criteria, modifying it where necessary.
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An introduction to your heart
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Patient experiences
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How to get involved
As part of NICOR’s commitment to put the patient voice at the heart of everything we do, NICOR’s Community Represenative Group (NICOR CAG) are looking for members who are cardiac patients, carers or family members of patients. We would also welcome applications from any other interested members of the public.
The purpose of the group is to consult patients and the public on new ideas for reporting cardiac audit data, future communications campaigns and anything else we need input into or would like to road test. This is an ideal opportunity to feed into the design of the National Cardiac Audit Programme so it best reflects your views and needs as patients, carers and family members. We would primarily look to work electronically but there may be opportunities to take part in face to face focus groups from time to time.
Please email your details or any contacts you have who are interested in taking part to nicor.auditenquiries@nhs.net.