Patients and the public frequently asked questions

Any researchers working for private companies wishing to access the data will need to demonstrate how their research will benefit patients and the NHS. While companies are likely to profit (for example, by developing new drugs), they will also be delivering vital benefits to patients.

No, the iCARE secure data environment is hosted by the NIHR Imperial BRC and provides governed access to health data for researchers to improve prevention, care and treatments that benefit patients and the health service. We do not own or sell any health data.

If researchers have access to larger, more diverse datasets, the more likely it is that they will find something that can help you, your family, your community or someone else with a condition. 

Yes. We have many industry partners to boost capabilities in a variety of ways through Paddington Life Sciences and other collaborations – from data analytics tools to research skills and resources. Industry is critical in rapidly translating pioneering research into mainstream care. It is the biomedical and pharmaceutical industries that have taken pioneering research and turned it into many of the medical innovations − such as the X-ray machine, MRI scanner and penicillin – that we take for granted today. Without the involvement of industry, the NHS would not be able to get new medicines, treatments and diagnostics for patients. Medicines and diagnostics are generally developed outside the NHS and government by the private sector in collaboration with academics as demonstrated by the critical role of pharmaceutical companies in successful development of COVID-19 vaccines.

Our priorities and research questions are co-designed throughout our public involvement work and we are building a network of patients and the public who are interested in being involved in our research and research management. We have embedded a team of public and patient representatives in our NIHR Imperial BRC Data Access and Prioritisation Committee to review all future requests by researchers to access data and we have a programme that enables researchers to involve and engage with the public throughout their work. You can read more about our public involvement work on our patients and the public web page.

Health data refers to data related to a person’s health and can include diagnoses and long-term health conditions, treatments and medications, tests and results (e.g. blood pressure measurements, blood test results), and imaging (x-rays, scans).
Every day, large amounts of health-related data (known as datasets) are generated by the NHS when healthcare professionals (doctors, nurses, and other staff working in the health service) record information in patients' medical records. Some of these datasets contain high-level information about populations and specific conditions, like how many people are admitted to hospital or the number of patients with diabetes. Other types of data are very personal, such as a records about an indivdual's consultation with their doctor.

GDPR is NHS Digital’s proposed collection of GP data to support health and care planning and research. You can find the latest news on the General Practice for Data and Research (GPDPR) website.

Health data research can lead to improved treatments, devices, interventions, and health system management. Evidence (How do people feel about data use) shows that people are generally comfortable with anonymised data from medical records being used for improving health, care and services, including research, provided there is a public benefit. Our data has the potential to be most powerful when everyone is represented.

Health data is important for your individual care but it is also very useful for improving health, care, and services across the NHS. When data from many different patients are brought together, researchers can look for patterns in the data to help them to answer important questions leading to improvements in clinical care.

As data custodians and a secure data environment, we put in place safeguards to avoid identification of any individual patient and minimise the risk of any data being misused. This makes it extremely unlikely that there would be any adverse consequences for people.