Medical research using patient data has led to advances that have saved many lives, and the UK has the potential to become a world leader in data-driven health innovation thanks to the detailed and comprehensive records of the NHS. Yet how best to use patient data for research purposes, in a way that is transparent, ethical and in line with public wishes, remains hotly debated.
The Academy first started work on the use of patient data in 2004, raising concerns about inappropriate constraints on the use of health data for research and highlighting the confusing professional guidance and unnecessary bureaucracy. The resulting 2006 report ‘Personal Data For Public Good’ changed the course of the debate away from simplistic ‘consent or anonymise’ choices, and ensured that ethics committees, NHS Trusts and others reviewing research proposals considered the risks of not doing research, alongside the risks of letting the research proceed.
We later spent four years working to influence EU Data Protection legislation – early drafts of which could have seriously hampered the use of health data for research. Engaging with decision makers and organisations in the UK and EU, we worked with partners who successfully negotiated a positive agreement in December 2015.
In 2018, we worked directly with patients and the public to understand their expectations and needs surrounding their own health data and how it is used. The resulting principles will help to guide the future use of data-driven technologies in healthcare.
The Academy's FORUM workshops also regularly address issues surrounding data use and artificial intelligence by bringing together partners from across the NHS, academia and industry. Recent workshop topics around data and AI include cancer early detection and diagnosis and the digital maturity of health and social care systems, while the 2018 FORUM Annual Lecture was delivered by Dr Omar Ishrak, Medtronic CEO on the topic of 'Transforming healthcare through engineering and technology'.