October 18, 2016

Bartha Knoppers – Complex ethical and legal questions on data use are increasingly pertinent.

When Darwins theories of evolution were substantiated by Mendel and Correns society found itself having to rapidly adapt to bioethical questions posed by these advances. Should we be tampering with nature? Can we choose the type of community we have? Earthquake moments kept coming; the discovery of chromosomes, genetic modification and recent advances in information technology, data storage and analysis. We are forced to ask questions on data privacy, security and sharing against a background of ever expanding data availability. Informatics and analytical technologies allow us to explore the link between our genes and disease on an industrial scale. Vast […]
May 6, 2016

Chris Marshall – Hacking through the thorny challenge of establishing project-to-project support and data sharing agreements.

The IMI (Innovative Medicines Initiative) drive large public private partnerships (PPPs) to work collaboratively towards the development of new and effective medicines. IMI PPPs such as U-BIOPRED, ABIRISK and OncoTrack produce vast amounts of data that with the right management will enable development of new therapeutic approaches for diseases such as cancer and asthma. However to do this, PPP data has to be shared. Intellectual Property matters Data in its various forms need to be formatted, shipped and stored to enable analysts to get the best they can out of it. This requires specialist help that compel owners to share […]
March 23, 2016

Angus McAllister – Protecting your data from harmful threats

Learn to protect your data. Health data owners assure patients through contractual agreements that the data drawn from samples that patients provide will be protected and unavailable only to a few specialised experts. Having spent millions on accumulating that data, it would be professionally negligent as well as ethically unacceptable if data owners process patient information insecurely. EU law reflects this view by applying harsh penalties to those that don’t respect health data protection rules. High fines coupled with the prospect of very damaging media attention could irreversibly affect public confidence in companies who promise to protect patient information, but […]
January 14, 2016

Ghita Rahal – eTRIKS Platform Service Delivery Lead

Medical research remains largely focused on disease striation, but its quickly moving towards personalisation. Consequently, medical research data is being produced at a mind-boggling rate. Innovation in sample analysis has seen a surge in recent years; so much so affiliated domains are struggling to keep up. Biomedical analysis techniques that measure thousands of parameters simultaneously, places a huge burden on those that manage the data. It is generally accepted now that data collection will become even more extreme with the advent of validated personal health monitoring applications. Instead of hundreds or thousands of clinical study participants, we will see millions of […]
December 2, 2015

Keith Elliston of the tranSMART Foundation talks Datathons

You know that you are on a threshold of something special when you see experts feverously working away on something they want to test live. Data integration sounds like a relatively dull activity, but nothing could be further from the truth. Is there anything more exhilarating than discovering something that has not been seen before? Of course discovering something new that is impactful is easier said than done, but Keith Elliston, CEO of the tranSMART Foundation, has turned this into his bread and butter. Keith wants to do more than make new discoveries; he wants to change the very philosophy […]
November 19, 2015

Translational research knowledge management ‘in action’: eTRIKS 2nd Community Meeting

eTRIKS’ second community meeting took place in Amsterdam at the World Trade Centre on the 22nd of October. The theme of the meeting was “eTRIKS in Action” with a presentation by a key eTRIKS supported project, ABIRISK, and the launch of the eTRIKS Labs initiative.   Progress on maximizing the impact of translational research datasets Scott Wagers CEO of BioSci Consulting. eTRIKS strives to maximize the impact of  translational research datasets by providing  platforms, services, guidance and trainings that enable efficient integration, staging, exploration, preservation and reuse of translational research data. In our first year we supported 5 projects. Now after […]
October 19, 2015

eTRIKS Labs Launch

Venue: World Trade Centre, Amsterdam Date of Launch: 22nd of October 2015 With large, complex datasets becoming the norm staging, exploring and analyzing translational research data can be challenging and resource intensive. eTRIKS is working to change that by providing platforms, services, and guidance for the use and re-use of translational research data. Our newest development is the creation of an online space, eTRIKS Labs, where new deliveries that are being worked on will be made available for review and feedback. The intent is for this to be a means of co-creating tools, services, training and guidelines for translational research We are launching eTRIKS […]
October 16, 2015

Protecting patients data

Patients are vulnerable; as the misuse of their private data can result with patient job loss, distress or perhaps worse. Legislators, companies and health care practitioners have a duty to protect the patients. Privacy is a human right, written into the European Convention on Human Rights, yet still there are groups of people completely unprotected by law. These groups include those individuals who generate the data themselves and those living in countries that do not understand the need for data protection. Of course patients whose data are held by the ill informed or by those prepared to flout the law […]