A brief overview of some terms relating to data and health

The public value of data refers to the benefits that data provides to society as a whole. It’s about using data to improve public services, solve social challenges, and create opportunities that positively impact communities, not just individuals or private organizations. Public value of data means using data for the common good—to make life better for everyone. This includes improving healthcare, education, transportation, and more through better decisions and innovations based on shared information.

Quantum is an European initiative that aims to create a common quality and utility label for Europe that will allow its use in all countries for scientific and health innovation purposes.

Real-time data is information that is collected, processed, and shared immediately, as it happens. Unlike data that is stored and analyzed later, real-time data allows users to see and respond to what’s going on right now. Real-time data is like getting a live update. It’s happening now, and you can use it right away to make quick decisions.

Real-world data (RWD) refers to information collected from real-life settings, outside of controlled experiments or clinical trials. It comes from everyday activities and interactions, such as visits to the doctor, use of devices, or behavior on social media. Real-world data is information about what happens in real life, not in a lab or under tightly controlled conditions. It’s like observing people in their day-to-day lives instead of studying them in an experiment. It is about patient records, insurance claims, or data from wearable devices like Fitbits. For example: tracking how patients use medications in their daily lives and the outcomes they experience.

Secondary data refers to data that was collected by someone else for a different purpose, but can be used for new research or analysis. It's not original or newly gathered data, but rather data that's been previously collected and is now being repurposed. Secondary data is like reusing an old report or dataset that someone else made instead of gathering all the new information yourself.

Secondary use involves (re-)using health data for purposes beyond individual care, such as research, public health monitoring, or policy-making. This might include using data to track disease outbreaks or conduct studies to find new treatments. 

Sensitive data refers to information that is particularly private and confidential. It’s more private than regular data and needs extra care when it’s collected, stored, or shared. In many cases, sensitive data is subject to stricter privacy laws and regulations to ensure it is handled securely.

SHAIPED is an European initiative that will support the synergetic implementation of the EHDS regulation with the AI regulation.

SNOMED it short for Systematized Nomenclature of Medicine - Clinical Terms.SNOMED CT is a structured clinical vocabulary for use in an electronic health record. It is the most comprehensive and precise clinical health terminology product in the world. SNOMED CT gives clinical IT systems a single shared language, which makes exchanging information between systems easier, safer and more accurate. It contains all the clinical terms needed, from procedures and symptoms through to clinical measurements, diagnoses and medications.

A secure processing environment (SPE) is a highly secure infrastructure and isolated environment. A SPE provides enhanced security compared to using a laptop when dealing with sensitive data. It prevents data from being transferred from its source to the data user. The data stays at its location where the research question is brought to the data in a secured environment and only the anonymous, aggregated results are transferred to the researcher.