A team of international researchers are urging the health and science community to ‘redouble its commitment’ to be open and transparent and deliver effective and robust governance frameworks under which personal health information can be used following recent data harvesting controversies.

Programmes addressing global health challenges, such as the 100,000 Genomes Project or the US Cancer Moonshot, which are dependent on comprehensive data analytics, ‘risk being fatally undermined’ in the wake of the Cambridge Analytica – Facebook scandal, the experts say.  

In an article published in The Lancet Oncology journal this week, the team, led by Professor Mark Lawler, Chair in Translational Cancer Genomics at Queen’s University Belfast and Associate Director at the newly-formed Health Data Research UK (HDR UK) institute, sets out a ‘roadmap’ to restore confidence.  
 
“The important thing is that big data can save lives, but we need to use it responsibly and effectively and I think it’s incumbent on the scientific community to be very open, upfront and straightforward and generate that trust and maintain that trust,” Professor Lawler told BJ-HC.

Approaches include articulating a ‘clear Social Contract, where citizens (as data donors) are at the heart of decision-making’, and embedding ethical rigour to all data-driven research processes, while clear sanctions with ‘meaningful effect’ must ensure that ‘data analysis and storage are not compromised by data breaches’, the authors write.

The electronic Data Research Innovation Service in Scotland, for instance, has developed a ‘multi-tenant research environment’ where each researcher needs to be approved or have passed a data use course before they can access computing environment workspaces, they explain. 

“There’s this idea of having a safe haven, where safe people work on safe data, in safe places, with safe outputs, that is very much the mantra that we would like to emphasise,” Professor Lawler added.

The researchers argue that each ‘data safe haven’ should have a ‘shop-window’ that allows the public to understand how data is being used and for what purpose, addressing the need for a better information and engagement campaign.

“One of the big things from an education point is going to schools and local communities as well, trying to remove that fear factor associated to big data and actually showing that (…) big data can lead to better outcomes in relation to health,” Professor Lawler said. 

Understanding Patient Data offers a variety of resources to support conversation about how health and care data is used, and the researchers warn that they must continue to ‘engage with the public’ through similar initiatives.

While HDR UK is establishing a national research infrastructure to maximise the value of health data science for the NHS, the associate director told BJ-HC there was also an opportunity to work collaboratively at a European level.

In April, thirteen countries, including the UK, signed a declaration to link existing or future genomic databanks across the EU, described by the European Commission as a ‘game changer for European health research and clinical practice’.

“Transparency at every step is vital, if we are to maintain the social license for data-driven research.

"Otherwise, rather than shooting for the moon, we risk flying too close to the sun," the researchers conclude.

The paper can be accessed here.