The National Data Guardian, Dame Fiona Caldicott, has launched a consultation on the future Caldicott Principles and extending the need to appoint ‘Caldicott Guardians’ across all organisations in the health and adult social care sectors.

Because the National Data Guardian’s role has now been placed on a statutory footing, all organisations working in NHS-funded healthcare or adult social care will need to have regard to guidance on the changes published as a result of the consultation.

We explain below the scope of the consultation and how to respond.

What are the Caldicott Principles and what changes are proposed?

There are currently seven Caldicott Principles. The current version dates from 2013. The principles provide that:

• the minimum amount of confidential information should be used and only where necessary,
• confidential information should be accessed only on a ‘need to know’ basis and
• the duty to share information for direct care is as important as the duty to protect patient confidentiality.

The proposed changes update and streamline some of the language in the existing seven principles, and could also introduce an eighth principle: Organisations should inform the expectations of patients and service users about how their confidential information is to be used.

The proposed guidance on this principle provides that organisations should take a range of steps to ensure that there are ‘no surprises’ for patients and service users about how their confidential information is to be used, including through providing relevant and appropriate information and promoting understanding and acceptance of uses of information. The guidance concludes that “patients and service users should be given an accessible way to opt-out”.

What is the role of a Caldicott Guardian and what is proposed?

A Caldicott Guardian is a senior person (often a clinician) within a health or social care organisation who makes sure that the personal information about its service users is used legally, ethically and appropriately, and that confidentiality is maintained.

The consultation also covers:

1. A proposal to issue guidance that all public bodies within the health and adult social care sector in England, as well as all organisations which contract with such public bodies to deliver health or adult social care services, should have a Caldicott Guardian if they don’t have one already. If brought in, organisations will need to have regard to this requirement and be able to justify any departure from it.
2. Ideas for what other guidance could be issued by the National Data Guardian to assist Caldicott Guardians.

What does Capsticks think about the consultation?

We welcome the simplification of language in the existing Caldicott principles. We think that the proposed changes make them easier to understand, and the new principle of guiding, and being guided by, an individual’s reasonable expectations is broadly sensible and modernises some of the thinking. However, we think the commentary around patients having an ability to ‘opt out’ needs to be more nuanced, because the range of circumstances where patients cannot do so is significant. If patients are told they have the ability to opt out but cannot do so, then this is not properly shaping their reasonable expectations.  

The growing number of principles and sources of guidance means that it will be more important than ever for organisations and clinicians to cascade knowledge and keep abreast of the changes. Potentially the workload for Caldicott Guardians and those supporting them will increase.

How can I respond to the consultation?

You can respond on behalf of your organisation or personally by clicking here. This site also includes background to the consultation.

The consultation closes on 3 September 2020. You may wish to involve clinicians and governance professionals, together with any service user forums that work with your organisation, in a combined response.

How Capsticks can help

We advise Caldicott Guardians and organisations every day on difficult decisions relating to confidentiality and making effective and safe use of service user information. We regularly speak at networking and training events for Caldicott Guardians.

If you have any queries around what's discussed in this article, and the impact of the proposals, please speak to Andrew Latham, Tracey Lucas or Adam Hartrick to find out more about how Capsticks can help.