New data usage regulations for transparency

Words by GOLD newsdesk

Pharmaceutical companies using NHS data to accelerate medical research have committed to following a new set of principles for its use, set out by the Association of the British Pharmaceutical Industry (ABPI).


The guidelines pledge the highest levels of transparency and sharing of insights to improve care across the health system. These principles have been developed in tandem with the NHS and been subject to testing from the general public and stakeholders including medical research charities and patient groups.


The principles have been designed to build upon existing regulations and safeguards that govern access to secure, anonymous data. Examples include remaining transparent about the purpose of health data access and ensuring contractual arrangements are clear and return value to the system.


Richard Torbett, Chief Executive, ABPI, commented: “These principles demonstrate that trust, transparency and public involvement are at the heart of how the industry uses health data for the benefit of everyone. Using health and genomic data can accelerate the understanding of disease, improve the efficiency of healthcare services and support the development of new medicines”.


The announcement has gained widespread support, with Kate Cheema, Director of Health Insights at the British Heart Foundation, highlighting that the charity is “especially pleased to see the clear commitment to actively promote Patient and Public Involvement and Engagement in health data projects.”