To celebrate the Academy’s 20th birthday, we have put together a snapshot of 20 of our biggest impacts. To find out more about our 20th celebrations and our future plans, read this blog by our President Professor Sir Robert Lechler, and follow #AMS20 on social media.
The Academy would like to thank all our funders, partners and collaborators, without whom none of this work would be possible.
#10 Helping data save lives
“There is a wealth of potentially life-saving information within data sets. This knowledge drives the Academy’s work to ensure that patient data is used in a way which supports the research community as well as the public.
“The Academy has been working on principles which will help researchers and policy makers to support the best and most ethical use of patient data, values which have been driven by members of the public.”
Professor Andrew Morris CBE FRSE FMedSci, Director of Health Data Research UK
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 manner that is appropriately 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 have 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 for the use of patient data will help researchers and policy makers to navigate the future of designing and regulating health technologies.