Governance of Information

There is wide agreement that the future of healthcare requires much greater access to patient data, and that this access needs to be arranged in a way that does not violate the reasonable expectations of patients and citizens more broadly, but the principles by which this should be done are still hotly debated.

I have analysed philosophically (and advised through my work with the National Data Guardian) how health data can be used more effectively for the purposes of delivering care to patients, and to improve population health, while respecting duties of privacy and confidentiality. I argue that the state’s duties to protect and promote health should be articulated through the right to public health, and that this is the best way to reconcile the value of health with other values such as liberty and autonomy. On this view, states which fail to take easy steps to reduce socially controllable threats to health violate their citizens’ rights. Ways that states can violate this right include failing to collect the data necessary to facilitate public health planning.

I’ve argued that citizens’ reasonable expectations play a significantly larger role in justifying the shape and limits of state activity than has often been appreciated. In line with this account, I developed with colleagues from UCL, a Public Value account for the NHS, which provides a reconciliation of the public interest in maintaining confidentiality and public trust, with the benefits that can come through commercial partnerships and sale of data.

I have also worked on the ethics of intellectual property, arguing that many of the most prevalent arguments deployed in favour of stringent intellectual property rights are confused and superficial. Questions on IP that I have written on include: What sort of thing do you own if you own a copyright? Does the fact that someone invests time and money into refining an idea give them a strong moral claim to exclude others from copying the invention? What principles should govern the overall shape of intellectual property policy?

Key Publications on Governance of Information