Aisling Burnand, Chief Executive, Association of Medical Research Charities, said:
“New digital technologies offer real potential to provide better clinical care. This report is a welcome addition to the debate about the responsible use of patient data. Appropriate governance which is understood by all is vital and can be difficult to achieve as regulators often lag behind the technology.
“The idea outlined in the report of early engagement enabled by having a space, similar to the ‘sandpits’ established by the Research Councils, which would allow regulators, the Department of Health and tech providers to discuss complex data sharing issues at an early stage of product development is not only welcome but could speed the possibility of tech enabled solutions for patients.
“These issues are not unique to DMH. There must be clarity about the regulatory framework and we hope the Government and others will provide clearer guidance to enable new data-driven technologies to be introduced for patient benefit that inspire confidence.”
Notes to editors
AMRC supports the use of patient data for medical research when applying the 4Cs (choice, care, competence and clarity) principles. The use of patient data is crucial in advancing medical research and in the care of patients helping to save and improve the lives of nearly half a million people each year.