The publication of the Caldicott Review marks the next stage of how as a nation we will best manage and use our health and care data for the benefit of patients. The Review sets out detailed recommendations on data security and the terms for consent/opt-out which will be carefully reviewed and discussed in the weeks to come.
Click here to read the report.
We welcome the further recommendation for a full and comprehensive public consultation on the proposed standards and opt-out model, in order to both test the model and build support for the approach and what it delivers for patients and society at large.
To support that process, we are pleased about the subsequent announcement by the Wellcome Trust to set up an independent task force to develop a framework to facilitate clear and transparent discussions with the public, patients and healthcare professionals around the importance and use of data to improve health. As partners in the UK Clinical Research Collaboration, the ABPI stands ready to support this work.
Dr Virginia Acha, Executive Director – Research, Medical and Innovation said: "The sharing of patient health records under strong governance and safeguarding procedures to protect patient confidentiality has significant benefit to patient care and the healthcare system. It allows the ongoing research in the development of innovative and effective medicines from major chronic disease areas, such as cancer, cardiovascular, neurodegenerative, and respiratory, to rare disease areas, such as Huntingdon's disease or cystic fibrosis. The work of the Caldicott Review, published today, takes us forward in advancing this agenda, moving health and care data from being an aspiration of some experts to becoming a realised and trusted resource for all."