People ‘don’t trust’ NHS with personal data, survey says

More than a third of people do not trust the NHS with their personal information through fears it could be lost, stolen or handed to private companies, a poll has found.

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.

Leading health charities have expressed their concern and disappointment over a lack of willingness for people to help support further medical breakthroughs, including cures to cancers and other long-term conditions, saying research was the key to saving more lives.

Experiences of sharing details with the health service and attitudes towards taking part in research have been laid bare in the survey commissioned by a European-wide campaign called eTRIKS to increase the sharing of patient data among studies, which is calling for a new “smarter approach” to the collection of research information. The project is looking to improve the reuse of medical research data.

When asked if respondents trusted the NHS with their personal data, 64.35 per cent said they did but 19.65 per cent were unsure and 16 per cent said they did not.

Only 43.70 per cent would be happy to share their medical data in the pursuit of research, yet 26.25 per cent said they would not hand over their details and 30.05 per cent were not sure.

Also, a total of 21.6 per cent said their personal data had been shared without their apparent consent, while 38.15 per cent were unsure and 40.25 per cent said that their details had not been taken.

Research standards expert Paul Houston, a spokesman for the eTRIKS project – a collaboration between 17 partners, including leading pharmaceutical companies, research organisations and universities – is now urging a “new culture of greater willingness” to support medical scientists.

It comes ahead of a data sharing event taking place at the EU parliament on October 20.

Mr Houston, who is the Head of Operations for CDISC Europe Foundation, a not-for-profit organisation campaigning for standards in research data, said: “Medical research continues to provide more and more breakthroughs, resulting in improvements to the lives of millions of people across the world.

However, in 2012 there were an estimated 8.2 million deaths from cancer in the world, but with more research further medical breakthroughs, including cures to cancers and other long-term conditions, could be possible.

We want 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.”

As part of the eTRIKS, a patient engagement event on the value of data will be staged on October 20 at the EU parliament to help assure the value of medical research data.

The project is supporting researchers to make the most out of the medical research data they generate by making it easier to combine and use data collected from different studies with new ones.

This is being done through the provision of open source software, services and guidelines. The eTRIKS team is also working to preserve data that has been generated.

Funded by the Innovative Medicines Initiative and the EU, eTRIKS stands for the European Translational Information and Knowledge Management Services.

Pierre Meulien, Innovative Medicines Initiative (IMI) Executive Director, 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.”

Patient advocate Marije Kootstra, who has asthma and supports research projects and the Dutch Lung Foundation, believes more people should take responsibility in advancing medical science.

The 22-year-old student, from Groningen, said: “If you want something to change and you are unhappy with the way things are going in healthcare then get involved so your voice can be heard. Your involvement doesn’t need to take that much effort – I meet with a group for one hour every month and there is also the opportunity to get involved online.”

Notes to editors

• For further details, for pictures or to arrange an interview, email jelley@ojpr.co.uk or call 07803 003811 or 01604 882342.
• eTRIKS is a project that is funded to support research projects in their efforts to make the most out of the medical research data they generate. eTRIKS operates under the principle that ‘integrated and explorable data are valuable data’. The aim is to reduce the effort needed to combine different types of data and making collected data from one project usable in other research projects. There are also ongoing efforts to preserve the data that has been generated. All this is being achieved through the provision of open source software, services, and guidelines.
• For more information on eTRIKs, visit: https://www.etriks.org.