Public urged to have their say on reuse of health data

Landmark 'Healthy Data' consultation is inviting views on the reuse of data and the role citizens play in the management and use of health data.

1 February 2022

People across Europe are being encouraged to take part in a landmark consultation on the reuse of health data.

Launched in December 2021, the consultation is seeking views on how health data could be used in future, for what purposes, by whom and for whose benefit.

By completing a quick three-minute test and sharing ideas, citizens can inform decisions on how public health data will be used in the UK and across Europe.

Why is there a consultation?

At the moment, only healthcare professionals directly involved in a person’s care are able to access a full patient record, including medical history. But some of the information may also be useful for specific purposes beyond an individual’s care. It can help to improve health, care and services through research and planning.

Health data is indispensable for research to prevent and cure diseases and plays a critical role in managing public health crises. Yet sharing data across borders, even in emergencies, is difficult. This hampers efforts to manage health threats, such as COVID-19.

By making more health data available and accessible for analysis, researchers and decision-makers can develop tailored solutions, such as better treatments, improved diagnosis and better management of health crises.

The Healthy Data consultation is inviting views, ideas and suggestions on the reuse of data and the role citizens want to play in the management and use of their data.

Open until 30 April 2022, the consultation is being conducted by the NHS Confederation, Sciensano, a public health research institute in Belgium, and Health Data Hub, a government agency in France.

The organisations are part of the EU-funded project, Towards the European Health Data Space.

Responding to the consultation

Citizens across Europe are encouraged to complete a quick three-minute test and share their ideas. The consultation platform explores how health data is used at the moment, citizens’ rights and the safeguards protecting privacy and provides information and teaching resources.

Watch this short video to see how reusing health data can benefit you, your family, friends and society.

Patient data saves lives: The bigger picture