NHS: Healthcare Data

Lord Kakkar Excerpts

Thursday 6th September 2018 Lords Chamber

[Lord Kakkar (CB)]

My Lords, I too join others in thanking my noble friend Lord Freyberg for securing this important debate and the thoughtful way in which he has introduced it. In so doing, I declare my interests as professor of surgery at University College London, chairman of UCLPartners and an active biomedical researcher who has had the privilege, for many years, to use patient data as part of my programmes.

We have heard that data has been and will continue to be fundamental, not only to the delivery of healthcare but to biomedical research. There will be greater and greater demand for high-quality data. As a result of the changing demographic and the increased requirement for resources to deliver healthcare, there are now demands from those who provide healthcare services and those who pay for them to have data that informs how those resources are appropriately used. There is, of course, the advent of personalised medicine: the opportunity to understand far more about the individual and to better characterise the disease at a genetic and protein level—in occlusion to understanding better the characteristics that drive disease outcomes—and so start to tailor care. This is increasingly complicated because patients have multiple comorbidities and are exposed to many different treatments and interventions, making achieving a good result for the individual patient much more complex overall.

Then as we see in so many areas of technology, advances in artificial intelligence and machine learning will provide remarkable opportunities to apply those novel sciences to diseases and therapies to improve clinical outcomes and drive the more efficient use of healthcare resources. However, tremendous challenges attend the question of how data can be appropriately marshalled in the future to improve clinical outcome, to improve the welfare of patients and to drive the more efficient use of healthcare resources.

Noble Lords who have already spoken in this debate have identified many of the issues but one of the most important is the quality of available data. A huge amount of data is generated every day as healthcare is delivered up and down the country. If you take a simple example of an ultrasound scan of the heart—echocardiography—each echocardiogram generates about two gigabytes of data. With 1.2 million echocardiograms performed every year that is some petabytes of data, which is a remarkable amount just for a single test. If you look at the 10 most important imaging investigations in the NHS, some 17 million CT scans, MRIs and ultrasounds are performed every year. The volume of data is astounding, but much of the quality is poor. Is the Minister content that sufficient resource is being applied at a local level in NHS trusts and organisations up and down the country to ensure that high-quality data is secured and that it is properly curated and marshalled in such a way that it can be applied for the benefit of patients and to broader research opportunities?

Beyond data quality there is the question of the skills required to drive this data revolution in healthcare. Data scientists are required in many different domains of modern human endeavour other than healthcare; therefore, healthcare organisations and research organisations will need to compete for those data scientists—that remarkable interface between mathematics, statistics and computational science. Is the Minister content that we have a strategy of education and skills development for health data so we will have skilled individuals available to drive the data science revolution in healthcare in the years to come?

Other skills sets will also be required. We will need skills to address the ethical questions, not only in terms of how data is used beyond improving an individual’s care, but whether using artificial intelligence and machine learning to make clinical decisions is ethical. We will need skills to develop the regulatory framework that allows for a much broader use of data for the delivery of care, and regulation of how that data is used to drive a research agenda and, as we have heard, broader commercial opportunities. Then there is the need for legal skills to ensure that—on a national level or individually by NHS organisations—the contracts and agreements that are entered into provide long-term benefit for the NHS and the nation.

Finally, there is the important question of trust. As we have heard with care.data, well-meaning and legally airtight initiatives to drive a broader opportunity to marshal data in the NHS failed because they failed to gain a social licence. How do we ensure that there is public trust with regard to the accumulation of more and more data and the application of that data for individual and broader societal benefit? How do we ensure that there is a consensus that data may be used beyond the individual and the health service delivery mechanisms to drive a broad research agenda and some of the other opportunities for wealth creation in our country? Are Her Majesty’s Government satisfied that they have addressed these issues sufficiently vigorously at the beginning of this important journey?

We have had the good fortune in our country over many decades to lead many revolutions in healthcare, be it in the area of in vitro fertilisation, transplantation or, more recently, mitochondrial DNA therapy. All of those have required very careful consideration in this Parliament of ethical, legal and regulatory issues and a firm commitment from government to drive forward communication to ensure public trust and confidence.