FAIR Data Steward

• Nijmegen
• Hybrid

Job Description

Job description

Would you like to become a professional FAIR data steward Do you like to work in an international and interdisciplinary setting Do you want to be part of ambitious European (EU) Projects to stimulate impact and sustainable change in health care systems Then this is a role for you!

To connect and improve patient data from hospitals registries European Reference Networks (ERNs) and National Health Systems we seek a data steward to join our consortium and collaborate on activities for Radboudumc. This role offers a dynamic and supportive work environment perfect for those looking to make a significant impact in the field of rare diseases.

As data steward you become an expert in the field of data management and interoperability for scientific research. The ideal candidate for this position has experience with the FAIR principles and metadata schema developing to meet the requirements and standards set for and from the scientific domain as well as by the organization. The successful candidate will work in a stimulating medical environment and will actively participate in a European network of experts who collaborate on best data stewarding practices for rare disease data.
You will be applying your technical and soft skills to an incredibly special field of rare diseases where the number of patients is small by definition. Therefore the community recognizes the pressing need for the joint analysis of patient data on natural disease history genetic makeup disease modifiers and treatment outcomes. However as the available data is fragmented across different care providers registries and countries and cannot be used to their full potential because data get lost are not associated with descriptive metadata or are not interoperable.

This role offers the chance to contribute to impactful actions at regional national and EU levels through the ERDERA project. You will be joining the Data Service Hub (DSH) Work Stream of the European Rare Diseases Research Alliance (ERDERA) which is a European partnership uniting over 180 public and private organisations across 37 countries around a single goal: turning cutting-edge science into tangible benefits for the thirty million Europeans living with a rare disease. The DSH has 4 Work Packages (WP) that are working towards building FAIR (Findable Accessible Interoperable and Reusable) data by building tools and workflows. On the national level you will be active in the national mirror group for ERDERA and relevant taskforces from Health-RI.

Role Requirements:

• Strong background in data management analysis or bridging IT and healthcare.
• Knowledge of applying FAIR principles.
  Metadata mapping according to Metadata Models.
• Experience with coding standards and ontologies.
• Interest in semantic data modelling applying ontologies and federated analysis.

Responsibilities:

• Collaborate with multidisciplinary teams and stakeholders to meet project objectives.
• Address fragmented data issues in rare diseases by ensuring data is well-documented and complete.
• Contribute to EU-funded projects (ERDERA).

Tasks

General

• Contribute to the development of recommendations and guidelines ensuring the interoperability of data structures on local regional and national level.
• Ensure FAIR data principles adherence across the ERDERA project Work Packages.
• Collaborate with internal and external stakeholders including consortium partners and governmental agencies if necessary.
• Keep open and effective communication channels with internal and external stakeholders to address concerns and ensure project alignment with expectations.
• Represent the team at events and meetings related to the project presenting results and raising awareness at local national and international levels about the importance of FAIR data
• Participate in the FAIR Data Stewards team at the Department of Medical BioSciences (MBS) especially the weekly meetings sharing updates doing presentations and brainstorming with the team.

Technical

• Collaborate in projects related to Rare Disease European Reference Networks (ERNs) FAIR data stewardship and European Rare Disease Research Alliance (ERDERA) to harmonise rare disease care and research in Europe.
• Collaborate with rare disease data sharing and analysis.
• Activities in ERDERA data service hub:
• Collaborate with resources to onboarding the Virtual Platform
• Keep track of communication and resources needs
• Provide FAIRification services
• Contribute to semantic modelling
• Attend General Assembly and/or Annual Retreat
• Scientific writing: documentation reports presentations articles
• Help with monitoring the relevant tasks of our group at ERDERA project and ensure alignment of project goals at all levels.

What we offer

• Diverse and multicultural work environment very open to international colleagues.
• Flexible / Hybrid work possibilities.
• Opportunities to career development and specialisation / learning.
• Access to great network of experts in FAIR principles.
• Empowerment and independence at your own responsibilities.
• Possibility to research and develop / learn at the job (to tackle low experienced people).

Watch our video here: of work

This position is located in the Department of Medical BioSciences (MBS) offering a stimulating medical environment with a European dimension. The MBS focuses on basic and translational research in the medical biosciences from molecules to humans to better understand disease and health and improve diagnostics and treatment.
On Fridays you will also join the Radboudumc FAIR data steward team. This is an active group of data stewards committed to the reusability of data tools and services and translating the FAIR data principles into practice. The group contributes to various national and European initiatives in the field of data sharing and FAIR (Findable Accessible Interpretable Reusable) data infrastructure development such as Health-RI and the European Rare Disease Research Alliance (ERDERA).

Team Environment:

• Hybrid Data Stewards: You will work in a team of ten data stewards with both technical and non-technical skills handling tasks from EU projects.
• Open Communication: The team values open communication working independently with a low hierarchical structure.
• Proactive Culture: Members are proactive in offering and asking for help maintaining awareness of each others workloads.
• Work-Life Balance: The team supports both personal and professional needs to maintain a healthy work-life balance.
• Diverse Backgrounds: The team prides itself on its diverse academic and cultural backgrounds known for efficiency and flexibility.

Work Schedule:
Weekly Meetings: The team meets every Friday at the office for a social lunch. And there are several online meetings from the EU projects.
Flexible Remote Work: Apart from Fridays and one other office day the rest of the week is flexible (remote or office work).

Facilities:

• The department has recently renovated offices.
• Access to cutting-edge technical equipment.
• Noise-cancelling meeting and working rooms.
• Shared areas with kitchen appliances nice reading material and board games for relaxing with colleagues.

Medical BioSciences is a science department where fundamental and translational biomedical research come together. You will study disease and health from the molecular level to clinical application with a strong focus on medical innovation. Researchers work closely with clinicians to translate new insights into better diagnostics and treatments. Using experimental and data-driven approaches we study biochemical cellular and physiological processes in health and disease.