Baroness Freeman of Steventon (CB)

My Lords, I have worked on decision aids to help patients and healthcare professionals, and I am also an unpaid adviser on the board of OpenSAFELY, a system for allowing research to be carried out securely on data. Every healthcare decision we make is based on knowing what has happened to people like us in the past. Knowing the outcomes for thousands of people and how much those outcomes vary is the only way we can do better than just blind hope. It allows us to say, “Out of every 100 people like you who have taken this option, X had this outcome”. That makes all the difference for those faced with a hard decision. For those developing potential new treatments, analysing data helps them to see those outcome differences in detail. Shared information is the whole basis of medicine. We in the UK have unique health data, and we must do all we can to continue to learn from it and to communicate it to patients. On the other hand, I know how people feel when their trust is undermined. Society works by spreading the costs and the benefits across many people, but industries such as insurance and marketing benefit financially if they can target their products to individuals. They would love to get their hands on our medical data. As other noble Lords have said, when you talk to people, they say that they share their data for the benefit of society but do not want it to be used for things that stratify society such as differential insurance pricing, differential access to healthcare or welfare, or profiteering—quite understandably. Some people’s experience has been that of trust abused—healthcare records accessed or used inappropriately. Every abuse of power we learn of undermines trust a little more. The thing about data is that you need it to be representative. If trust is lost from some groups of people, we will end up losing the data of those groups of people; that erodes the value for everyone, especially those groups themselves. If you want to be trusted, you need to be trustworthy. Demonstrating trustworthiness takes dialogue, listening, honesty, owning up to mistakes, good faith and trying to do better. Where there is a breach, like at UK Biobank, it needs to be fully and transparently investigated with lessons learned. Everyone needs to know that their voices are heard, respected and acted on. Everyone should be able to say what they want to happen to their data. If they do not want it shared, that has to be respected too. I do not expect that my doctor’s consultation will be recorded and uploaded to AI for note-taking. For me, that is sharing my data, and I do not know with whom. As the National Commission into the Regulation of AI in Healthcare today reported from its consultation, “a majority of participants believing that patients should be informed when AI has been used in their care”. What are the Government’s plans for data-sharing opt-outs, and how will they ensure that they are always respected? Is consent always going to be explicitly sought for AI during consultations? Are patients being meaningfully involved in dialogues about all the uses of their data, as the Government make plans for more? We have to be able to answer “yes” to all these questions before we can reap the benefits that our data should give us.