Lord Kamall (Con)

My Lords, I thank the noble Lord, Lord Patel, for securing this debate on using patient data for patient-centred research, health and social care. I also thank all noble Lords who spoke and refer the House to my interests in the register—I will not name them all, because that would be the rest of my three minutes. We can have the most innovative healthcare systems in the world, but that will be meaningless if patients do not trust the NHS and other health and social care providers with their data. There is some consensus on the need to collect and share patients’ data to improve patient care and research, not only for today but for the research that will drive the innovation of tomorrow. Currently, not all patient data is digitised or shareable. Records do not always follow the patient. Information is often duplicated, delayed or not available when most needed. Although we hope that the single patient record and Health Data Research Service will respond to that challenge, the key will be patient trust. First, recent events that have been mentioned, such as the UK Biobank incident, have shown how fragile public confidence can be when governance and, outside that, cyber security, are not watertight. How does the Minister’s department intend to address the problem of researchers downloading patient data to work in less secure environments, sharing it on sites such as GitHub, or even perhaps selling or offering to sell it—they did not actually sell it—as we saw? Secondly, can the Minister tell the House whether organisations and individuals accessing patient data for research will be required to meet minimum cyber security standards? Thirdly, how will they address the concerns of civil liberties organisations such as medConfidential, which have found UK Biobank’s response less than reassuring? At this point, I should also thank the noble Lord, Lord Tarassenko, for his reassuring points on that particular incident. Nowhere is the need to get this right clearer than in dementia, as the noble Baroness, Lady Murphy, said. It is the leading cause of death in the UK, affecting individuals, families and the economy. A recent Alzheimer’s Research UK report tells us that the UK has world-class medical science, major data resources, early-phase trial capability and a trusted regulatory environment, but that progress is constrained by weaknesses in data co-ordination and implementation. Without high-quality data and interoperable systems, researchers and clinicians cannot identify patients early, recruit them into trials, evaluate new diagnostics or scale treatments across health and social care. This is not a technical detail; it is a foundation on which meaningful progress to diagnose and treat dementia will stand or fail. Will the Minister tell the House whether her department has considered how to connect existing initiatives so that dementia data is linked, accessible and usable for research? Real progress will depend on confidence: from clinicians that systems help rather than hinder, from patients that their data is secure, and from the wider public that data governance is transparent, proportionate and accountable.