The ethical and social implications of using patient data need to be carefully thought through, and the right kinds of regulations developed, to ensure data is used in socially just and equitable ways.
Where advances in data science have the power to create valuable insights into health, illness and treatments, it may be ethically the right thing to use patient data. But there are also some significant ethical and social questions about how this data should be used, managed and protected, especially where the technologies are rapidly developing at a pace that policy and regulation may not be able to keep up with.
Following the House of Commons Science and Technology Committee's recommendation to form a Council on Data Ethics, there has been a great deal of discussion about how the UK can be at the forefront of thinking about the ethical implications of new uses of data.
We’re involved in conversations about getting the right ethical frameworks in place, following on from:
- The Royal Society & British Academy’s recent report on Data Governance
- The Nuffield Foundation’s development of a Convention on Data Ethics
As part of our future technologies workshop, Professor Mike Parker presented a great overview of the ethical issues emerging from the use of data.
We are working to hold a meeting in early 2018 that will seek to take forward regulatory discussions about how new digital technologies can be taken up into the NHS, in a way that encourages innovation while ensuring transparency and trustworthiness for patients, clinicians and the public.
The meeting will seek to develop a set of shared principles to guide interactions between the NHS and industry. This is to ensure that organisations that hold patient data are well-equipped to understand the value and sensitivities of the data, how it should be protected, and what questions need to be clearly addressed if data is going to be used, for example, to help train commercially-developed software.
The use of AI and other digital technologies in health and research is highly topical and ongoing media coverage helps cast light on where concerns arise.
We produced a commentary on the collaboration between the Royal Free London and DeepMind outlining the governance and communication issues that need to be learned.
We wrote an article discussing how to ensure patients don't lose out if there is a public backlash on AI.
Following publication of the Life Sciences Industrial Strategy, Professor John Bell wrote a commentary that highlights many of the issues we're working on. This includes the need to ensure the value of patient data is preserved and channelled into benefits for patients and the NHS, where tech companies might wish to make use of this data.