Why does NICOR collect my health data?

How important is my data?

Patient data are vitally important for research

Access to patient data has helps important discoveries in fighting heart disease and many other illnesses.

It helped scientists:

• establish the link between smoking and diseases such as lung cancer and heart disease
• confirm the health risks of asbestos 
• show that high blood pressure increases heart disease risk 
• work out how the AIDS virus is transmitted 
• prove babies put to sleep on their back are at lower risk of cot death 
• demonstrate the benefits of lowering cholesterol using statins, now a standard treatment for patients at high risk of heart disease.

More information about pioneering research programmes on the British Heart Foundation website 

Audits assess treatment and patient care over time

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.

NICOR uses data and information from heart patients

• To assess the way hospitals and care providers care for patients compared to the approved national standards and levels and helps improve patient treatment, where necessary. Hospitals send data to the Care Quality Commission (CQC) and the NHS Litigation Authority (NHSLA) to show that they meet the required standards of care.
• To describe and explain the different cardiac conditions and the benefits and risks of the methods used to treat them. This can then be used to help patients make better choices when picking a care provider.
• To allow independent researchers to use this information to help judge which medical practices have the greatest benefit to patient care. This research may then be used to help set national, or international, clinical practice for care providers.

NICOR works with identifiable information

• To trace individual patients through the healthcare system over long periods of time. Following patients and the treatment they receive, as they move from clinic to clinic and hospital to hospital, or from general practice to hospital care and back again into the community, requires a unique patient identifier so that further treatment episodes (including re-interventions, an important quality indicator) are tracked.
• To calculate the effects of different kinds of treatment on heart disease patients. Our audits link their information with information from other data sources, and enables clinicians and managers to identify how to improve care for patients.
• To examine socio-economic issues such as inequalities in access to services and outcomes, by using postcode information. When used with other medical information, date of birth and postcode-derived deprivation information allows realistic statistical comparisons and ensure comparisons about the safety of local services are meaningful.
• To investigate the role of ethnicity in some conditions and outcomes. The likelihood of some conditions, and outcomes, varies between different ethnic groupings. Because of this, NICOR audits contain sensitive data about patient ethnicity.

NICOR shares data

• Hospitals can access all the information (for their own hospital only) that they submit, including patient identifiable data. Hospitals can audit their data effectively, individual patients can be identified, as necessary.
• Cardiac networks are provided with anonymised national patient level data, different networks within the UK can be compared. Individual hospitals can be identified, but individual patients cannot.
• Independent researchers are provided with project specific anonymised patient level data relevant to the research question. Applications for NICOR data are peer reviewed by the relevant project board. Individual patients cannot be identified.