The RSS, with significant input from members of our Medical Statistics Section, has contributed to a consultation into the priorities of the new statutory National Data Guardian (NDG) carried out by the inaugural holder of the post, Dame Fiona Caldicott.
The NDG role was set up to help ensure that the public can trust health and care information is securely safeguarded and used appropriately by those working in healthcare, such as GPs, hospitals, care homes and any other organisations working with those services. The position was first established in November 2014 and legislation was passed in December 2018 to place the role on a statutory footing.
A consultation was launched in February 2019 to help ascertain what the key priorities should be for the NDG going forward, which the RSS has responded to, having kept a close eye on this issue since the care data debacle in 2014.
We raise a number of points in our response, including:
- While welcoming the NDG’s role in ensuring people have ‘access’ and ‘control’ of their own health and well-being in the form of data. However, we emphasise the need to be clear what is meant by ‘control’.
- With the continuous growth of big data and the potential for innovation, we have encouraged the NDG to promote the use of data with a ‘common good approach’.
- We also raise the point that the NDG is ‘likely’ to play a governance role, such as low-level interventions to ensure that organisations are using, and interpreting, data correctly to safeguard patient data. ‘This would be another opportunity to promote and share good practice,’ our response adds.
- Data sharing is marked as another important aspect for the NDG to focus on and that efforts should be made to establish good practice nationwide.
- The response also emphasises the importance of safeguarding confidential data. This is ‘crucial and should be and should be considered as the cornerstone of the entire remit of the NDG,’ our response concludes.