On the 12 July 2016 the APPG on Medical Research held a parliamentary drop-in, entitled ‘Can patient data revolutionise healthcare?’, to bring parliamentarians together to inform parliamentarians about the use of patient data in medical research.
The event was attended by 21 MPs or their researchers, 16 peers and 3 committee clerks. Attendees included APPG Chair Liz McInnes, George Freeman (previous Minister for Life Sciences), and the interim Chair of the Science and Technology Select Committee, Dr Tania Mathias.
The drop-in event provided an opportunity for parliamentarians to meet patients and experts using patient data for publicly-funded research into a variety of disease areas, including mental health, cancer, cardiovascular and rare diseases. This was showcased through eleven case studies.
The case studies centred on a number of themes, including the potential for patient data now and in the future, public attitudes to data sharing and the challenges surrounding the use of patient data. Two of the case studies are highlighted below:
Alzheimer’s Research UK- Sea Hero Quest
Alzheimer’s Research UK showcased a game they developed with Deutsche Telecom called Sea Hero Quest.
The game was designed to help improve researchers understanding of navigational cognition, and to build the largest crowd-sourced database on human spatial navigation. By playing for just a couple of minutes, the game provides what would normally take scientists hours to achieve in a conventional study.
UK Cystic Fibrosis Registry
The Cystic Fibrosis Trust was also present talking about the UK Cystic Fibrosis Registry. The Registry collects demographic, health and treatment data on consenting people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland. Non-identifiable registry data is used to improve the health of people with cystic fibrosis through research, to guide quality improvement at care centres and to monitor the safety of new drugs.
Finally, during the drop-in event we asked attendees ‘How willing or unwilling would you be to allow your medical records to be used in a medical research study?’ and to indicate their answer on a voting board. Encouragingly the vast majority of attendees voted ‘very willing’.