Sharing of medical research data ‘vital’ to helping find cures for deadly diseases

People who say no to their data being used to help clinical trials are potentially robbing themselves of the chance to help speed up the discovery of life-saving treatments to deadly diseases, a workshop at the European Parliament has heard.

But fears over the potential misuse of data and a perceived lack of trust towards ‘faceless’ medical organisations were cited as understandable causes for concern at the eTRIKS conference in Brussels.

The summit saw representatives from Government, healthcare providers, pharmaceutical companies, researchers and patient groups come together to discuss ways of balancing patients’ concerns over the sharing of their data with the benefits of making that information available to a wider audience.

Physician scientist Scott Wagers, chief executive of BioSci Consulting, said: “We all tend to view problems only from our own perspective.

Understanding other perspectives and looking to where there can be synergy as opposed to compromise can lead to creative solutions and real progress on challenging issues such as the sharing and re-use of medical research data.”

Unlike a medical record, medical research data has been assembled after an individual has given informed consent to take part in a research study.

The conference, held at the EU Parliament on October 20, urged a new culture of greater willingness to support medical scientists by both standardizing and sharing research data and by providing better information to research participants on how their data will be used and better education among the general public on the issues around data privacy.

Val Hudson, patient representative for Asthma UK on the U-BIOPRED Ethics Board, said: “If we don’t share data we are not going to get the advances in medicine we so desperately need.

We will only see real progress by increasing our range of knowledge and more data will help with this – but there is a public perception that giving out data puts you at risk. We need to change that mindset and develop greater trust, otherwise people are simply not helping themselves to help others.

“There is a growing demand for personalised medicines but to get the specific information you need to tailor a drug you have to be able to tap into a wider pool of shared datasets to have a better understanding of the differences between individuals with the same disease.”

The conference heard that the data that we can now generate with new technology is so detailed that the value of any given dataset extends beyond the research question for which it was originally collected.

Philippe De Backer, Belgian Secretary of State for Data Privacy, social fraud and the North Sea, attended the session and said: “The real problem is when there are research questions you did not know you needed to ask when the data was collected.

Researchers see potential value in re-using existing datasets but that needs to be balanced against the protection of privacy.

Patients are understandably concerned that handing over data come back to haunt them and more needs to be done to reassure people that it will not be used against them when it comes to future employment, stopping you getting a mortgage or inflating your insurance premiums.”

The European Translational Research Information and Knowledge management Services (eTRIKS) is a multi-stakeholder collaboration funded by the EU and the Innovative Medicines Initiative (IMI).

Its main focus is on helping other projects maximize the value of their data through the provision of advice and open source tools to enable the integration, exploration, and preservation of medical research data.

The conference comes on the back of recent research which revealed 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 total of 56 per cent of the 2,000 people surveyed in the inaugural National Personal Data in Research Survey would not allow their data to be shared for research.

Research standards expert Paul Houston, Head of Operations for CDISC Europe Foundation, a not-for-profit organisation campaigning for standards in research data, said: “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.

However, in order to support our new smarter approach to research, we also need a new culture where research participants and the general public are informed and are part of the solution.”


Notes to editors

  • For further details, for pictures or to arrange an interview, email 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 achieves this by providing services and advice on managing data, explorable tools, training and other data services to European Projects. 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:
  • eTRIKS is an IMI (Innovative Medicines Initiative) As an IMI project eTRIKS is supported by the EU and by the European Federation of Pharmaceutical Industries and Associations, a number of whose members participate in the project ( ).
  • For more informationon IMI visit
  • The logos for the IMI, the EU and EFPIA are below:

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