October 27, 2016

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 […]
October 17, 2016

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 […]
October 14, 2016

Smarter research would allow ‘more cures’

Further medical breakthroughs including cures to cancers and other long-term conditions could be possible if more people took part in research. That’s the claim from a European-wide campaign to increase the sharing of patient data among studies, which is calling for a new “smarter approach” to the collection of research information. It comes as new data rules from the European Parliament are set to be adopted across the continent in a bid to strengthen and unify data protection for individuals within the European Union (EU) Research standards expert Paul Houston, a spokesman for the eTRIKS project – a collaboration between […]
February 29, 2016

eTRIKS enlists society in an effort to increase the impact and value of medical research data.

Medical research is a societal activity. The Innovative Medicines Initiative funded public/private partnership, European Translational Information and Knowledge Management Services (eTRIKS) is taking societal engagement to a new level and engaging society in helping to assure the value of medical research data.   Increasing the value of medical research data 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 […]