Your data, your control

Paul Affleck, CORECT-R Programme Manager.

The use, and abuse, of personal data has dominated the news in recent months so the ‘Your data, your control’ workshop organised by use MY data could not have been more timely. I was one of sixty attendees at this event, which included patients, carers, healthcare professionals and researchers, plus representatives of charities, NHS England, commercial companies and pharma. The workshop examined how patient data are used, how patients are informed and involved, and how patients could set the agenda.

There were a series of fascinating talks. Chris Carrigan gave an update on recent developments including the upcoming National Data Opt-out, the General Data Protection Regulation (GDPR) and data sharing between NHS Digital and the Home Office. Dr Geoff Schrecker, from the Royal College of General Practitioners, explored the National Data Opt-out and what will happen to existing type one and type two opt-outs. He did an admirable job of explaining a complicated process. After lunch we heard from Dr Raj Jena and Dr Antonio Criminisi regarding InnerEye, a Microsoft machine learning project to map cancer scans. It was reassuring to hear how they protected patient data and the audience were excited about the possibility of more precise treatment. Dr Jena also outlined Sherloc, a proposal to detect cancer early by applying machine and deep learning to medical and non-medical datasets. This ambitious proposal has been short listed for Cancer Research UK’s Grand Challenge scheme and received ‘seed’ funding. It will be fascinating to see what happens next.

James Peach from the Medicines Discovery Catapult, then gave a talk that passionately advocated greater use of the UK’s stored biological samples. His talk was followed by discussion of how use MY data members could encourage the holders of biological samples to ensure they were accessible to researchers and used. James estimated that only 15% of samples collected for research are actually being used.

The day finished with table discussions that explored what organisations we thought held our health data and whether there were data that we thought should be collected (but perhaps were not being collected currently). I thought I was reasonably well informed about the National Data Opt-out and the GDPR, but I learnt a great deal from the day. It was also interesting to see practical examples of how data, in all their forms, are being employed. I came away from the event in a positive frame of mind but also mindful that to garner public support there is a need to clearly communicate what data are being held and how they are being used.