Meet our featured member for July... Dame Fiona Caldicott

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We are delighted to say that our featured member for July is National Data Guardian for health and adult social care, Dame Fiona Caldicott. Dame Fiona recently became a Fellow of the Faculty and kindly took the time out of her busy schedule to speak with FCI Vice Chair Anne Marie Cunningham about why she joined the Faculty, how she thinks it could develop, and the importance of transparency and trust in data sharing.

Please could you introduce yourself and give a quick overview of your role as National Data Guardian for health and adult social care?

Hello everyone. Having worked as a general practitioner, a psychiatrist and psychotherapist, I have held many roles across the NHS and academia, including President of the Royal College of Psychiatrists, Principal of Somerville College, Oxford, and Chair of Oxford University Hospitals NHS FT. My current role is that of National Data Guardian for Health and Care in England.

Since I carried out my first review of how patient data was handled across the NHS in 1997, as computerisation grew, I have continued to advise Government and the health and social care system on matters related to data security and confidentiality. In 2014 I became the first National Data Guardian. As such, I must represent people’s best interests in matters related to the use of their health and care data. The role, which is independent, considers the use of data collected within the health and care system, and I am also able to challenge and scrutinise where it is shared more widely.

I do this by providing formal advice and guidance at policy level to Government and health and care organisations to ensure that data are kept securely, handled confidentially and used appropriately and in line with the public’s reasonable expectations. I am of the firm belief that there should be no surprises for patients and those seeking support from care services about the way their information is being used. The importance of maintaining trust is the principal theme that has shaped my work as NDG.

We’re delighted that you’ve recently joined the Faculty as Fellow! What led you join?

Thank you. I am pleased to be joining such a capable and committed group of colleagues. In a nutshell, I support the values of the Faculty and think that achievement of its plans will be of great benefit to patients and users of care and the competence and wellbeing of clinicians.

In my role as National Data Guardian, from which I will step down in March 2021, my commitment to the advancement of clinical informatics as a professional discipline has always been very high on my list of priorities.

There are rich benefits to be realised if the public is willing for health and care data to be used beyond its own care, in research and service planning, if we can build on the trust already placed in us as clinicians.

Do many people understand what we mean by clinical informatics, and how could we promote that such a profession exists?

I don’t think so. ‘Informatics’ is not a word that many of us use frequently. I wonder if it has been ‘tested’ with the general public by ‘Understanding Patient Data’ for instance. A more user friendly subtitle for the Faculty might help.

How do you think that the Faculty could influence the clinical informatics landscape and in what ways would you like to see it develop?

Through working with others in the field, to avoid duplication and identify synergies eg the UK Council of Caldicott Guardians, the Chief Clinical Information Officers in health and care organisations, and Health Education England.

Throughout my career in the NHS, I have put patients at the centre of my activities and remain keenly aware of the crucial nature of the relationship which people have with their clinicians, and the place of trust within that. Those clinicians cannot fully provide what those coming for care need unless they have the tools at their disposal in the current health and care system to work competently and efficiently. It is difficult to see how that can be achieved now without the use of informatics.

I am very aware that not only have we failed to maintain a dialogue with the public on these matters, so that they are sometimes surprised by what is possible in the use of data, and what is not. But also, we have not done enough to ensure that clinicians of all backgrounds have the competencies that would benefit them in their work. I should very much like to play a part in the work of the Faculty to ensure that we do as much as we possibly can to address that omission.

In the current COVID-19 pandemic, we’ve seen a rapid increase in the sharing of patient information in all aspects of life. Which aspects do you think have been positive and should be maintained, and how can we protect patient data in the wake of the virus?

There have been many examples of rapid action to use data in the public interest, the development of the shielding strategy and compilation of shielding lists, for example. I do think that some of these departures from normal practice have been so beneficial that they should be continued in the long term. For example, the emergency powers allow clinicians to share additional information in a patient’s Summary Care Record, beyond the minimum, without having to seek the patient’s consent again to do that. When we have asked the public about such data sharing to support their own care, we have heard clearly that people want such information to be available wherever they seek care.  In my view, that is an entirely sensible approach that should have been happening anyway.

I also think that the pandemic has had the positive consequence of advancing the public’s understanding of the role that data may play in the management of health and care. We do need to maintain this momentum. For many years I have been commenting with some regret that most people seem to know little about how their health and care data is used in the services that collect it. The public now has more awareness as statistics on disease spread and tragic deaths have become a matter of daily reporting. So as we come out of the pandemic, we will be engaging with a more aware public, I believe. We may find that people have stronger feelings about how their data are being used and as a result we will need to learn what their views are and to do what is necessary to earn their trust.

Following on from this, what are some key ways in which we can build public trust and be transparent with how their data is used?

Building and maintaining public trust about data usage is now more important than ever given that trust is an essential element in ensuring that people are accepting of the data sharing changes COVID led to, and that they comfortable using any new technologies such as the NHS COVID-19 app and improved virtual consultations. As we move into a phase of the pandemic where data will be used in sophisticated ways to trace disease spread and outbreaks, transparency and openness is key from those involved in making important decisions about data use. And those decisions should be open to scrutiny and challenge. It is essential than citizens’ voices form part of the conversations taking place.

More generally, the public needs to be engaged with meaningfully about how its data are being managed and used, and what choices it has in respect of this. I do not underestimate the amount of effort that is involved in doing this, but it is achievable for those with a steadfast commitment to transparency and building policy that is rooted in the intelligence that initiatives on public attitudes provide. A good example is the wide-reaching engagement programme carried out by the OneLondon Local Health and Care Record Exemplar, which is speaking with Londoners about data sharing and acting responsively to what is heard.

I also think that we, the data sharing ecosystem, need to do a lot more to engender trust by explaining to the public the great benefits that come from data sharing. Most people simply don’t think about how useful their data are, and can have a natural, knee-jerk response to the concept of its being used for purposes other than their individual care – they often suspect those purposes of being profiteering by marketing and insurance firms. We know that one of the key conditions for acceptance of the use of data in research and planning by the public is that it must deliver a benefit back to the NHS and the public. If we explain these benefits, we usually secure trust and ready permission. This is something my Office and I will be exploring in greater detail later this year. We have launched a public dialogue project to explore how people weigh up the benefits and disadvantages of health and social care data sharing for research.

Finally, how do you think we can better prepare clinicians to share patient information appropriately and with confidence?

This is a topic I feel very strongly about. The reluctance to share information, even when it is in the best interests of a person’s individual care, has long been matter of concern to me. The Information Governance Review, which I delivered in 2013, described a culture of anxiety around data sharing, which led me to add a 7th Caldicott principle: The duty to share information can be as important as the duty to protect patient confidentiality.

And yet we were told by people during the public consultation we held in 2019 about the NDG’s priorities that this reluctance to share is still a problem. So I decided to make this one of my three published priorities: encouraging the system to do more to promote information sharing for individual care. As part of this commitment we will be working together with relevant bodies to carry out a formal, system-wide review of existing guidance on information sharing. Being a member of the Health and Care Information Governance Panel[1] (HCIGP), I will be part of the process of ensuring that information governance advice given to the system is consistent and coordinated. We will also be working with training and education bodies – such as the UK Caldicott Guardian Council – to ensure advice and guidance about information sharing is embedded into their programmes where possible.

This year, my team carried out a survey with key stakeholders to identify the barriers to data sharing for direct care. It found that those working in the system feel that the laws that govern data sharing are so complex, poorly understood, and difficult to navigate that they do not have confidence to do that. We used the findings of this survey, which will be published within the next few weeks, to develop recommendations for the education and training of health and care staff. I look forward to sharing these outcomes with Faculty members.

[1] The HCIGP was established to support the co-ordination of the provision of strategic IG advice to the health and care system. Its role is to advise and support NHSX in the development of strategic IG advice and provide expert input and reflection as requested.