PREFER

Data management in PREFER

2017-07-05

Over the next five years, PREFER will gather large amounts of data from patients and other stakeholders. To ensure we handle data appropriately, PREFER has developed an initial data management plan that will evolve with time. Here, the PREFER data management team explains the thoughts behind it. 

Monika Brand, Actelion
Monika Brand, Data management task leader

The data management plan provides oversight, and guides partners who will conduct studies within PREFER.  It is an umbrella document that describes who owns data, where data will be stored, how they will be shared and the standards PREFER will use for data collection and evaluation. Every individual study will provide specific information on data management in line with the principles in the plan.  

This document will evolve during the course of the project. It was developed by a core team led by Monika Brand (Actelion), Isabelle Huys and Eline van Overbeeke (KU Leuven), representing three perspectives: the operational, strategic and practical aspects of data management.

Isabelle Huys, KU Leuven
Isabelle Huys, deputy coordinator

Monika Brand is the private co-lead for the operational management in PREFER and leads the data management task. According to her, data privacy, protection and transparency of data handling are key in any project, and even more so in a multi stakeholder project like PREFER.  

Isabelle Huys is part of the strategic management of PREFER, and public lead for the final PREFER recommendations. Together with one of her PhD students, Eline van Overbeeke, she has contributed hands-on experience of the needs of PREFER researchers to ensure the solutions are workable, as well as secure.

Eline van Overbeeke, KU Leuven
Eline van Overbeeke, PhD Student

Eline van Overbeeke is directly involved in the first phases of data collection. According to her, the possibility to share data in a safe and efficient way between everyone contributing to tasks will result in better collaboration. Which in turn will contribute to delivering results on time. Moreover, it also ensures the protection of personal and sensitive data gathered in interviews, focus groups and patient preference studies. According to Eline van Overbeeke, the data sharing solutions that provided in PREFER offer a good balance between security and productivity.

If you have questions regarding data management in PREFER, contact Monika Brand (Actelion), Eline van Overbeeke (KU Leuven) or Isabelle Huys (KU Leuven) through contact@imi-prefer.eu.