Your data, our challenge: how do we work together to ensure we all get the best healthcare?

On 2 October, the UCLH Biomedical Research Centre and AboutMe initiative launched a year-long programme of engagement and involvement events for patients and the public in order to better understand their needs and expectations when it comes to using their health data for research at UCLH. Sixty patients, members of the public, in2science UK students and other key stakeholders put their questions about use of their data for research in the NHS to an expert panel which included a clinician (Dr Gill Gaskin, UCLH), researcher (Maxine Mackintosh, UCL), national data provider (Professor Daniel Ray, NHS Digital) and representatives from industry and commercial sectors (Professor John Whittaker, GlaxoSmithKline Pharmaceuticals and Dr Hamish Tomlinson, BenevolentAI). The panel discussion was facilitated by Sir Jonathan Montgomery, Professor of Healthcare Law at UCL. The launch kick-starts a series of interactive engagement events with patients and the public starting in January 2020, to unpack the often-opaque aspects of health data ownership, value and use of data for research in order to understand people’s expectations and concerns and build trust around key areas including consent, use of artificial intelligence, governance and industry collaborations.  Details of the engagement events will be published on the UCLH BRC website (https://www.uclhospitals.brc.nihr.ac.uk/) shortly. 

You can view the launch event at https://www.youtube.com/watch?v=CyL_KcPbvmQ) (note: the event starts at around 8 minutes from the start of the video).