The launch of the Data Management Plan at the end of May 2020 is a significant milestone for HEAP. Developed by the team at the Medical University of Graz, Austria, who are leading the delivery of HEAP’s Data Interoperability and Sharing Work Package, the Data Management Plan sets out how the cohort data sourced from wearable sensors, purchases and omics disciplines during HEAP’s research projects will be managed, stored and reused.
The Data Management Plan also describes a model for secure and ethical storage of data objects from human patients, pathogenic organisms, and genetic resources. The model balances privacy issues with the accountability required when using personal medical data to develop new clinical treatments and policy approaches.
The Medical University of Graz team, led by Dr Heimo Müller, worked with several other HEAP project partners, including legal specialists the MLC Foundation, and the CSC Center for Science, who are leading the technology-based Secure Infrastructure for Big Data Work Package, to produce the plan.
The technical aspects of the plan include how researchers can request access to the HEAP Information Commons (IC), the repository infrastructure that makes data available for sharing and reuse. Also covered is a proposed framework for metadata, which is key to making data findable – ultimately enabling the platform to be FAIR compliant.
Work Package Leader Dr Heimo Müller said “The Data Management Plan has been a very successful collaborative effort, and has given us the opportunity to look ahead collectively to what needs to be done in the later stages of HEAP”. Future deliverables include a framework for training on data management, with practical Bring Your Own Data (BYOD) workshops.
HEAP Project Coordinator Professor Joakim Dillner said: “This Data Management Plan has a wider significance as it puts in place a rules-based model for data access security standards that can be used not only for HEAP, but also for future projects with an element of data management.”