Understanding Patient Data exists to support conversations about how health and care data is used, providing a range of resources to help people find out more. We are also involved in conversations about how to get the system right. Appropriate governance is key to ensuring patient data is used in a way that is fair, transparent and accountable.

The National Data Guardian for Health and Social Care (NDG), currently Dame Fiona Caldicott, advises and challenges the health and care system to help ensure that citizens’ confidential information is safeguarded and used appropriately. The NDG launched a consultation in February 2019 to identify new priorities in light of legislation passed in December 2018 which puts the post on a statutory footing.  

The consultation set out four proposed priorities:

  • Individuals’ access to health and care data and data control models
  • Dialogue with publics around innovations which use patient data
  • Getting the basics right around information sharing for individual care
  • Safeguarding a confidential health and care system.

Understanding Patient Data’s full response to the consultation can be found here. A summary from our response is that:

  • These priorities are all crucially important and, with the exception of a dialogue around innovation using patient data, represent long-standing issues that mainly require focus on implementation, rather than new policy development.  
  • With a scope across England, the NDG has an important role to play in gaining an overview of the current state of health data management and use, which is highly fragmented and inconsistent.
  • Working from these priorities, the NDG should be a champion of best practice, highlighting the tremendous opportunities afforded by better, responsible use of data as well as providing guidance in areas that require improvement. 

We look forward to further discussion and work with the NDG as it looks into these areas of interest. The consultation closed on the 22nd March.