By Hugo Greenhalgh on 15 Nov 2015
Will EU law “devastate” health research?
This week, the Wellcome Trust urged European institutions to strike a better balance between privacy and access in the new Data Protection Regulation to enable “life-saving research to continue”.
It argues that the law as currently proposed would be so restrictive it would have a “devastating” impact on the ability to use healthcare data for study purposes.
The Trust has joined 120 other signatories in an open letter to The Times, which calls on the EU to allow the continued use of personal data in health research, while maintaining confidentiality.
Paul Aylin echoed these sentiments in his inaugural lecture as Professor at Imperial College London earlier this month. Reflecting on a career spent analysing data and striving for improvements in public health, he also warned that the EU’s proposed data protection reforms would make future research “virtually impossible”.
Access to statistics has allowed Aylin to work on some of the most important breakthroughs in public health and a clear pattern of improving quality of care can be seen in his career. His involvement Bristol Heart Scandal inquiry highlighted the importance of health data in spotting anomalies. This led to a role in the investigation of the Harold Shipman murders, where he found that greater surveillance of healthcare outcomes from routinely collected data, could have detected Shipman’s crimes sooner.
Prof Aylin said that his interest in public health stemmed from his time as a junior doctor in the 1980s. He recalled that patient safety was “rarely discussed” back then, a sign of the cultural shift in the past few decades towards higher quality care.
A key part of improving that quality came when he worked with the newly-formed Dr Foster to produce the first Hospital Guide in 2000, which ranked England’s hospitals using the Hospital Standardised Mortality Ratio developed by Prof Sir Brian Jarman. He noted that this and subsequent Guides “changed the whole climate” on the use of data to benefit public health. For instance, this data was invaluable in highlighting poor quality of care at Mid Staffs and paved the way for the Francis Inquiry in 2010.
Access to healthcare data has helped to shine a light on previously dark corners of care in recent years. While perhaps well-meaning in wanting to protect citizens’ privacy, European leaders proposing measures that could reduce transparency should heed the warnings before taking a potentially retrograde step – especially when those alarm bells come from those, like Prof Aylin or the Wellcome Trust, who know what they’re talking about.