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NHS patients must be taught to share their data, says EU lobby group

Combining public funding and public data for whose benefit?

By Alexander J Martin, 18 Oct 2016

Bemoaning the results of a survey showing that more than a third of people don't trust the NHS with their personal information, a new EU-funded lobby group has stressed the need for a “new culture of openness” in allowing patient data to be shared between studies.

eTRIKS, which describes itself as “the result of a collaboration between 17 different partners” including Pfizer, GlaxoSmithKline, AstraZeneca, Imperial College London, and the University of Oxford's e-Research Centre, has reported the results of its own survey.

The survey is released ahead of a data sharing event taking place at the EU parliament on 20 October, which is being introduced by Soledad Cabezón Ruiz, a Spanish Socialist Worker's Party MEP, and professional cardiologist, alongside Scott Wagers, the CEO of BioSci Consulting.

The project, which aims to “reduce the effort needed to combine different types of data and making collected data from one project usable in other research projects” complained how “a total of 56 per cent of the 2,000 people surveyed in the inaugural National Personal Data in Research Survey would also stand in the way of advances in medical science by not allowing their data to be shared for research.”

eTRIKS stands for the European Translational Information and Knowledge Management Services, and is funded by the controversial Innovative Medicines Initiative (IMI). IMI sources its own €3.2bn funding from the EU and also from the pharmaceutical industry's Brussels-based lobbying association, EFPIA. It has been criticised in an article in Nature noting how it uses public funds to facilitate the free flow of intellectual property from public research organisations and academia to the large pharmaceutical giants also funding it.

IMI's executive director, Pierre Meulien, said: “Medical researchers rely on data from patients to advance our understanding of diseases and develop new treatments. By bringing together different stakeholders in research, projects like eTRIKS are well placed to facilitate the use of this data to advance research while respecting patients’ wishes and addressing wider ethical and legal issues.”

Almost 65 per cent of the survey's respondents said they trusted the NHS with their personal data, while 16 per cent said they did not and 20 percent were unsure – but only 43 per cent said they would be happy to share their medical data “in the pursuit of research” as eTRIKS phrased it.

A further 21 per cent said their personal data had already been shared without their consent, while 38 per cent were unsure whether their healthcare information had been flogged to third parties, while only 40 per cent said that their details had not been taken.

Paul Houston, a spokesman for eTRIKS, was quoted as “urging a 'new culture of greater willingness' to support medical scientists.” Houston, who is also the head of operations for eTRIKS partner, CDISC, a research data standards organisation, added: “Medical research continues to provide more and more breakthroughs, resulting in improvements to the lives of millions of people across the world.”

He continued to explain that eTRIKS wanted “to create a new culture of openness in research, making the sharing of data much easier and opening up more opportunities to pursue medical advances. But to support our new smarter approach to research, we also need a new culture of greater willingness from research participants and the general public.” ®

The Register - Independent news and views for the tech community. Part of Situation Publishing