Health data project appeals for 5 million UK volunteers

Our Future Health, the organisation funded with nearly £0.25 billion by Government, private sector and charities, aims to collect sufficient data to help improve the prevention, cure and early treatment of a range of diseases and conditions including cancers and dementia.

The first efforts to recruit people will focus on London, the West Midlands, Manchester and West Yorkshire, before being expanded to the rest of the country. Eventually, data collected will be made available to use within trusted research environments (TREs), in line with best practice.

The organisation said that the idea was to provide “a highly secure computing environment, where researchers can access and work with data subject to clear rules and monitoring, and very strict controls. The controls limit what data can be removed, to minimise the risk that an individual person can be identified”.

Those organisations accessing data will be subject to a robust accreditation process to they achieve the necessary standards of data governance and cyber security, as well as operational, privacy and technical requirements, stated Our Future Health. 

It added this would be based on standards and frameworks including the Office for National Statistics Five Safes framework, the UK GDPR, and international cyber security standard ISO 27001.

Volunteers for the program will be issued with questionnaires regarding lifestyle and health issues and need to be willing to share their medical records. Measurements will include blood pressure, weight, height, blood sugar and cholesterol, as well as genetic tests. They will also be able to access information about their own risks of certain diseases.

To date Our Future Health says it has raised an estimated £160 million from life science companies and disease-related charities, in addition to £79 million provided by Government funded investment body for science UK Health Research and Innovation.

Pic: Hush Naidoo/ Jade Photography