When I hear about the many wonderful ways in which data-driven innovation is rapidly changing health and care, I remember an exhibit on futurism that I saw at Tate Modern many years ago. . This early 20th century art movement captured the breathtaking energy of the modern era, embracing technology, speed and “the new,” in a spirit of liberation from the constraints of the past.
I too share this feeling of enthusiasm for the potential of data and technology. But as we move towards this bright new future, it’s important that we don’t lose sight of what’s important to the people whose data enables these advancements, and that opportunities are always weighed against risks and risks. prejudices.
Successful data initiatives are built on a commitment to transparency and an active understanding of what matters most to people. Professionals and the public want to be informed, involved and understand the choices people have. When these conditions are not met, we see situations like recent delay and resetting the General practice data for planning and research program.
These fundamental principles are so important that in December 2020, Dame Fiona Caldicott enshrined them in a new Caldicott Principle:
Principle 8: Inform patients and service users how their confidential information is used
A series of measures must be taken to ensure that there are no surprises for patients and service users, so that they can have clear expectations about how and why their confidential information is used, and what choices they make. have about it. These steps will vary depending on the use: at a minimum, this should include providing accessible, relevant and appropriate information – in some cases a greater commitment will be required.
As a “new principle on the block,” it comes at the right time and adds clarity to the advice I have offered to government and others on their data use plans.
In my recent response to Government data strategy project for health and care, for example, I stressed the importance of using clear, unambiguous language and being open with people about who could access their data and why. I have also indicated that recognizing the potential risks is as important as selling the many benefits. People know that there are usually risks associated with the use of data, so they should be addressed for any specific use and context, in addition to saying what is being done to mitigate them.
Principle 8 also informs the advice I have given to the government on its Police, Crime, Sentencing and Courts Bill, about which I have serious concerns. The bill requires clinical commissioning groups (CCGs) to disclose information to police and other specified authorities, for the purposes of their duty to work together to prevent and reduce serious violence in their local areas. The obligation states that they can do so without breaching any obligation of confidentiality. While it is important to tackle serious violence, it is essential that the risks and damage this new obligation poses to patient confidentiality, and therefore to public confidence, are taken into account and addressed.
People need to be confident that they can confidently share information with those responsible for their care without worrying about how it will be used, by the police or others. And healthcare professionals must be confident that the confidential information they regularly collect in the course of care will not be used in a way that could have a negative impact on care or that could be inconsistent with their duties and professional and ethical obligations to their patients.
If people feel that their information can be used in unexpected ways, for purposes that they may not support, it significantly undermines the fundamental relationship of trust. The effect may be to deter patients from seeking treatment or, when seeking treatment, to disclose only partial or false details, thereby depriving clinicians of the information they need to provide safe and secure care. effective. Incomplete and inadequate health and care records are at the expense of both safe care for individuals today and system-wide planning, research and innovation for the future.
Decisions about data use require not only expert data protection knowledge of what is lawful, but also practical and professional wisdom and experience to consider what would be ethical and fair, balancing the potential benefits. and prevention of future harm. As the dynamics of data-driven technology develop rapidly and the opportunities to connect data evolve across government and society, it is essential that those seeking to harness the power of data do both. optimism and prudence: never losing sight of why the duty of confidence is so important in the field of health and care.