APPG on Medical Research: why patient data is a matter of life and death for your constituents By Rohan Bundell, Public Affairs Officer, AMRC Published: 4 April 2018 On Tuesday 27 February, the All-Party Parliamentary Group on Medical Research held a breakfast roundtable in Parliament. ‘#DataSavesLives: why patient data is a matter of life and death for your constituents’ brought together a group of stakeholders spanning patients, researchers, healthcare professionals, medical research charities and funders, and officials working across the life sciences sector. Alongside the group’s Chair, Chris Green MP, parliamentarians in attendance included the Baronesses Howe, Jolly, Masham, as well as Chris Ruane MP and Baroness Finlay’s researcher. Why is patient data important for research and care? Professor William Dixon, Director of the Arthritis Research UK Centre for Epidemiology, University of Manchester, opened proceedings, speaking about his work as both a clinician and researcher of musculoskeletal conditions. Outlining the latest technology in remote smartphone health monitoring – an app known as Remora – he explained how integrating patient data into clinical records enables patients to help shape and improve their treatment by visualising their own data. Similarly, he spoke of the great potential of real-time data collection, which could help prevent ‘flare-ups’ before they become more serious. Baroness Howe of Idlicote (left) and Baroness Masham of Ilton (right) How can public trust be built? Talking about the work of Understanding Patient Data, which aims to support conversations with patients and the public about how health and care data is used, Nicola Perrin explained how low levels of awareness and transparency have contributed towards public concerns. There is a pressing need to explain what safeguards are in place to protect people’s data and what options are available to them, especially in the context of the national opt-out on patient data coming into force on 25 May 2018. She also referred to a series of resources that are being produced to better communicate the many benefits of sharing patient data, such as the animation below. When the public are able to clearly see the link between their data, care, and treatments, a large majority recognise its value. Patient data saves lives: The bigger picture, Understanding Patient Data The patient voice Two representatives from the British Heart Foundation & Cancer Research UK Patients Panel shared their stories of what happens if we fail to properly harness patient data. Dr Emily Travis spoke about her cancer diagnosis and how, if only her data had been properly joined-up between various clinical settings patients, an earlier intervention could have been made. Later, Jasmine Hodge-Lake spoke about the adverse reaction she had to standard heart medication prescribed by her GP, arguing that if her data was collected and tested as routine, reactions like this would be known in advance and easily avoided. The table also heard from David Ward, who recounted his lifelong experience of sharing patient data through his participation in the National Survey of Health and Development ‘Insight 1946’ group. Alongside 5,000 other individuals monitored from birth and tested periodically, David’s story highlighted what happens when we do properly harness patient data. Not only has his data contributed to a wide range of studies, and hence the development of many different treatments, but it also helped identify a degenerative condition he was suffering from, allowing action to be taken before it became more serious. Jasmine Hodge-Lake (left) and Dr Emily Travis (right), British Heart Foundation/Cancer Research UK Patients Panel Other attendees Key officials from several arms-length bodies and Government departments were also present. Professor Jonathan Montgomery (Chair of the Health Research Authority), spoke of the need to gain the confidence of healthcare professionals, as well as patients. NHS England’s Rachel Merrett described the positive example set by Tower Hamlets, a relatively deprived London borough whose success in joining-up patient data has catapulted it to the top of NHS outcomes rankings. The table also heard of the public engagement plans now underway at both NHS Digital - with Professor Martin Severs relaying news of their work - and the Office for Life Sciences - with Jen Boon drawing attention to the Government’s recognition of the importance of patient data in the industrial strategy. Next steps The APPG on Medical Research is planning its next event on the UK’s departure from the EU, to be held in Parliament in June 2018. To stay updated with upcoming activity or if you have any questions about the work of the group, please contact [email protected].