Lord Patel (CB)

My Lords, after listening to the last debate, I am tempted to speak only about how health research data might help economic growth to alleviate all the debt that we were talking about, but I will not. I thank the noble Baroness, Lady Merron, for taking this debate and ,all noble Lords who signed up to take part, despite the brief time for which they are allowed to speak. I also thank the Library for its excellent brief and POST for the publication of its report on the subject of health data research. I fully support the Government’s initiative to strengthen the collection and use of health data for research but I hope that the commitment from the Government will be longer term and that they will be prepared to do whatever is necessary to make the UK a world leader in health data research. The use of health data to improve healthcare is not new. In the 14th century, plague killed one-third of the population because they did not have the ability to use data and track the epidemic. By 1854, however, John Snow tracked the cholera outbreak in Soho and controlled the spread of the disease. There are many examples of the use of data and epidemiological studies leading to improvements in healthcare, such as the association made in 1954 between smoking and lung cancer and chronic lung disease and, later, the association between HPV and cervical cancer. Most recently and quite importantly, the UK Cystic Fibrosis Registry, kept by the Cystic Fibrosis Trust, identified genetic mutations that occur in some children and adults who suffer from cystic fibrosis, and identified an effective drug that improves their ventilatory function. The advent of AI and machine learning, genomics and pharmacogenomics, and the linking of such data through machine learning and imaging technology will transform the research using health data for better healthcare and innovations. Better data means fewer deaths. A strong, efficient health data platform that can be accessed for research is crucial for the success of the life sciences strategy and for economic growth. Currently, the life sciences sector has a turnover of £146.9 billion and employs over 360,000 people. Apart from delivering better healthcare, health data research is the fuel that will accelerate that by adding more than £10 billion annually in value added growth. The UK’s strands for health data curation have the ability to track longitudinal data from a diverse population of 63 million, but the current system is fragmented and scattered across thousands of GP practices, hospital trusts, community health clinics and others that deliver healthcare. However, the UK health data environment is changing from a siloed system to a national framework. One hopes that the active phasing-out of data sharing, which often led to data breaches, will now stop that from happening. Data sharing will be replaced with the secure data environment, SDE, and the data stay-put model, where the data will stay on one platform and not be shared but rather acted upon. Researchers will be allowed to access only that data, and it will not be exported. The Five Safes model for data access and outputs will make the data secure. The launch of the HDRS, the Health Data Research Service, which is backed by £600 million of Government investment, keeps the promise going. That is all very good, but the verdict is that, while it is a great blueprint, delivery is the test. We have good plans, but let us hope that delivery will follow. What are the challenges? Currently, regional secure data environments operate in silos in over 180 trusts. Often, they are written and uncoded, which means that using them is difficult. They are diverse, handwritten and uncoded, and they occur in 180 trusts and thousands of GP practices, and are therefore not connected. Data is currently written and collected in different hospitals and general practices but is not unified in any data models. The governance to access data for research is multi-layered, causing bottlenecks. One has to answer to so many different regulators just to be allowed to use the data. If the UK is to become a leader in clinical trials, health data needs to be coded and easily available in every hospital. To maintain public trust, there need to be clear, transparent, and legally binding arrangements as to how data can be accessed and used for the pharma and tech industries, and how the NHS will benefit from the benefits that accrue, both in healthcare improvement and money. I personally approve of the opt-out model rather than the opt-in model, because the latter will not work for health data research. What are the consequences of not addressing these challenges? If we do not address them, it will affect the NHS; it will affect patients, because they will not receive modern care; and it will affect the UK economy. I therefore have four key questions for the Minister. First, what specific legal mandate will be needed for longitudinal data streams that link GP and hospital data? Secondly, what effective plans will be put in place to end the fragmented secure data environment? Thirdly, on public trust, will the Government legislate that any benefits from the use of and access to NHS data by commercial companies flow back to the NHS? Fourthly, are there plans for trusts to have a workforce, such as data engineers, to clean up the data and produce the appropriate codes that will be used by AI and machine learning to national standards and, if so, how will they be funded? I look forward to the Minister’s answers.