Since the landmark Caldicott Review in 1997, the Caldicott Principles have defined how confidential information collected by health and social care organisations should be used and protected. They have evolved over time in response to shifts in public attitudes and the needs of the health and care system.
Dame Fiona Caldicott, the National Data Guardian (NDG), has recently proposed some changes to the principles, including adding a new one. Earlier this month, we responded to the NDG’s public consultation on these changes, which you can read in full here. This post summarises the main recommendations in our response.
The eighth Caldicott principle: a necessary change
We support the NDG’s plans to add a new Caldicott principle on the need to inform people so that they can have clear expectations about how data will be used. That is, after all, one the reasons Understanding Patient Data exists. We believe it’s important that people can understand the different ways health and care data is used - but public awareness is still low. For example, our most recent survey found that 63% of the public are unaware that NHS organisations give third parties (charities, academics, industry) access to data.
We know that conversations about the use of data for research and planning work best when they are held at a local level, ideally in the context of what matters to the individual. National programmes or campaigns can feel abstract and be too far removed from people’s lives to resonate with them. So, it’s good this principle sets a clear responsibility for health and social care organisations to engage people with the issues around data use in a local context.
Making the new Caldicott principle work
Getting the wording right will only go so far - putting the new principle into practice across the whole system is the real challenge. Data is not always an easy topic to get people interested in, even if they care about issues like privacy and confidentiality. It’s a long journey to take people on from what matters to them when they’re trying to manage their health, to developing their understanding about data and how it can be used to improve care for others. We’ve written more about this recently.
Given the challenges of trying to explain how data is used to people, health and care organisations will need support to follow this new principle. That means targeted guidance, training and advice, including easily understandable examples. This guidance will need to evolve over time and should be responsive to different contexts; a GP surgery will need a different kind of information to a researcher working with an NHS Trust, for example. Well-structured worked examples will help organisations understand their responsibilities.
Future-proofing the principles
Government policy around health, data and technology is changing fast. Recent developments in the data policy landscape include Laura Wade-Gery's NHS Tech Review, the new NHSX Centre of Expertise, the NHSX Data Strategy for Health and Social Care, which is currently in development, and the National Data Strategy, which was published just last week.
With so much change happening in this space, the Caldicott Principles and Caldicott Guardians are a vital bedrock of assurance for patients and professionals that data will be used appropriately. We therefore support the proposal to issue new guidance that says all health and social care organisations, and all contractors working with them, should have a Caldicott Guardian to help them follow the principles. Ensuring the principles are upheld as new data-driven technologies develop, and novel uses of data are explored, will be critical to maintaining people’s trust in the health and care system. If health data strategies are serious about being centred on patients, the Caldicott principles and an understanding of public views and values must be at the heart of them.
We’re pleased to see the introduction of a new Caldicott principle around informing people and managing their expectations about how data is used. It’s something we believe is incredibly important at Understanding Patient Data and it could not come at a better time, with awareness about data growing during the pandemic. But we also know that health and social care organisations are stretched and finding the right time and level of information to explain data can be challenging. So, we’re looking forward to supporting the NDG in her work to make sure the new principle, and the changes to the existing ones, are embedded in the culture of the health and care data system as it evolves.