• Introduction
• WP 1: Project management and administration
• WP 2: Disease understanding and outcome definition
• WP 3: Data access and sources
• WP 4: Data platform
• WP 5: Data analytics
• WP 6: HTA regulator-payer integration
• WP 7: Dissemination and communication
• WP 8: Legal, ethics and governance

Work package 3: Data access and sources

WP3 will address the challenges related to identifying and prioritising potential data sources; negotiating appropriate data access agreements; homogenisation of data and the establishment of data management plans to support the long-term sustainability goals of PIONEER. To achieve its objectives WP3 will work closely with WP4 and WP8.

Objectives:

1. Identification of potential data contributors. WP3 have already identified a number of potential data contributors as part of the initial stages of PIONEER and will continue to work with these groups to ensure their interests, and those of PIONEER, are aligned allowing for the implementation of Data Access Agreements.
2. Data needs and data gap assessments. These assessments will provide a bridge between the research questions and the data sources and help to identify which data sources can be used to address PIONEER’s prioritised research questions, as well as identifying where there may be specific data gaps within PIONEER’s network of data contributors.
3. WP3 will work closely with WP8 to develop a Data Access Agreement for data contributors. This agreement will specify whom, and under what circumstances, PIONEER researchers have access to the data. It will also specify what tasks the data contributor has agreed to undertake, and what (if any) compensation they would expect in exchange for providing access to their data.
4. Conversion and harmonisation of data. WP3 will collect metadata on each data source to produce a data catalogue. The data catalogue will allow PIONEER researchers to identify specific data sources that may be applied to the research question they are asking. WP3 will use the approaches successfully established by previous IMI projects, specifically EHR4CR, EMIF and eTRIKS, to harmonise data while maintaining security and consistency.

WP3 Partners

Erasmus Universitair Medisch Centrum Rotterdam, The Hyve B.V., Bayer, University of Lund, University of Tampere, Technische Universität Dresden, Fraunhofer IZI, Goeteborgs Universitet, Radboud University Medical Center, European Organisation for Research and Treatment of Cancer, Universitaetsklinikum Hamburg-Eppendorf, Varian Medical Systems, Astellas Pharma and Covance.