Newcastle Hospitals collect and hold a large range of patient data, including:
- Disease-specific data
- Data about treatment and care
- Use of different medicines and drugs
- Clinical samples, x-rays and scans
This data provides important information which can help researchers, scientists and doctors to develop new healthcare approaches or treatments.
At the moment, a lot of our data is kept in different places and on a range of IT systems, which limits how it can be analysed.
To allow better use of this valuable information source, we are working with carefully selected specialist partners, who have the technology and expertise to ‘clean up’, organise and categorise what we hold. By doing this, we can increase our capacity and ability to understand what the data is saying, which in turn provides better quality information to help with research, planning and new treatments.
In some cases, the ‘improved’ data will be used by our own doctors, nurses and scientists to develop the care we provide in Newcastle, and other times it could be used by external researchers and organisations involved in improving healthcare or developing innovative treatments.
Protecting patient confidentiality
Any data shared outside Newcastle Hospitals’ systems under a partnership agreement would have all patient identifiable information removed, meaning it cannot be linked to an individual’s personal details.
The only exception to this above would be if a patient has provided full, explicit consent to share their identifiable information.
Before agreeing to share any data, we ensure it will be used to improve health and that it will be held safely and securely, with agreed processes and criteria for how it may be accessed.
All requests to access data will be thoroughly and carefully assessed to ensure compliance with recognised ethical and legal requirements.
Different formats for the data provided could include:
- Anonymised – any means of identification is permanently removed from data. This means that it is no longer considered personal data and is not subject to data protection laws.
- Pseudonymised – means of identification are temporarily replaced with ‘placeholder’ values, such as random numbers or codes, before the data leaves NHS systems. This can be helpful where there may be a future need to re-identify the data if it’s returned for internal use.
- Synthetic data or artificial data – data that is artificially generated by a computer to mimic real-world data. It contains no real patient records or sensitive information, allowing it to be used for testing, conducting simulations and research, while protecting privacy.
How is data stored?
The data involved is always kept safe and secure so that only approved people can have access, for the right reason at the right time. The technology used to store the data meets the highest standards of safety and cyber security.
How would Newcastle Hospitals give access to information or data?
We have strict confidentiality and intellectual property processes, which govern use of the trust’s data and provide clear terms and conditions. It is extremely important that these processes are followed.
We have clear agreements with carefully selected partners, to give controlled access to specific healthcare information and data. This access is always for a defined purpose which aims to improve healthcare and is only agreed after following approved processes.
Safe sharing of our data is governed by a dedicated group, which assesses legal and ethical consent, validity and purpose of the request.
The value associated with this data is recognised and any income generated is invested into NHS services at Newcastle.
Any external organisations wishing to enquire about collaborating with Newcastle Hospitals should visit our commercial website.
What processes are in place if someone wishes to opt out of sharing their data for research purposes?
Newcastle Hospitals has a long history of research activity, as such we have well established processes in place for patients to consent to their data being used.
If patients do not wish to share their data for research purposes they can visit the national data opt out website.
