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eTRIKS project on the use of research data is looking for patients’ views!

The IMI and EFPIA funded eTRIKS project is reaching out to the patient community to gain insight and support that will help them meet the full potential that European medical data has to offer.

Patient’s views will be used to develop educational material, for the practical purpose of peer-to-peer learning, so that general understanding of the importance of data and its reuse becomes more widespread.

Required participation: A 30 minute teleconference with individuals to establish views on the value and sharing of data; in addition to an optional one day face to face meeting planned for April 2016.

Opening date: August 1st 2015

Closing date: December 31st 2015

Contact email: trevorgarrett@biosciconsulting.com

Background information

Across Europe health researchers are collecting more and more information about diseases and treatments and how they impact individual patients.  Often data is stored in incompatible, inaccessible systems that make it difficult or even impossible to reuse the information to improve patient outcomes.  The challenges to using the data to their full value may be both practical and ethical.  

eTRIKS is a pivotal project funded by the Innovative Medicines Initiative (IMI JU) that focuses on knowledge management support for a broad spectrum of national and international medical research projects. Our focus is to help translational researchers improve the efficiency of translating quality data into quality patient treatment, by providing a platform that enables efficient Integration, Staging and Exploration of clinical and research data.

eTRIKS is looking to inform medical researchers about the value of data and to provide practical advice on making data more valuable through ethical sharing.  To do this we want to bring together patients, eTRIKS expertise and supported project representatives, to gain insight into the value of data and data reuse. The output of the plan will be educational material that will be used to widen understanding of data and its reuse. 

Overview of the process

  1. Interviews by teleconference. TC interviews with patients and patient representatives  will be conducted to gain views and insights. The scope of the patient cohort, should cross disease fields and national borders, to gain a wide distribution of perspectives.

  2. Face to Face meeting in April 2016 with patients, patient representatives and researchers. This will be a full day meeting with patient representatives to be attended by a broad range of experts involved in data management, software development, analytics and eTRIKS supported projects. The objective will be to plan the development of educational material on the need to share and reuse data.

  3. Development of educational material. Members of eTRIKS and other volunteers will be assigned tasks to develop the educational material decided upon during the face to face meeting in April.

  4. Dissemination of educational material. This will be done through the IMI, patient organisations, supported projects and through multimedia outlets.