[MA 2023 10 ] Understanding the requirements and expectations of clinical researchers for an institute-wide FAIR Data Point

Amsterdam UMC, location AMC, Department of Medical Informatics
Proposed by: Martijn Kersloot [m.g.kersloot@amsterdamumc.nl ]

Introduction

In 2016, the FAIR Data Principles were published, describing that (research) data should be Findable, Accessible, Interoperable, and Reusable by humans and machines [1]. Many research institutes and funders around the world are quickly adopting these Principles [2], and as a result, researchers are increasingly being asked or required to make their data (more) FAIR. A key component of 'becoming FAIR' is describing your research project and the data you collect with metadata (i.e., data about your data, such as contextual and contact information or a data dictionary describing the format and variables in a dataset). This metadata can be stored in a FAIR Data Point, a metadata repository that provides FAIR access to digital object metadata [3].

Research institutes are increasingly looking into establishing institute-wide FAIR Data Points or metadata repositories (e.g., the LUMC [4]). These repositories serve two purposes: first, to showcase research projects to the global scientific community, increasing visibility and collaboration opportunities; and second, to provide researchers with a centralized repository of data that can be easily discovered and reused for future research. One major challenge, however, is populating these FAIR Data Points with metadata and data from research projects. It has not yet been investigated whether and how researchers prefer to contribute metadata. However, understanding their expectations and requirements is critical to the successful establishment and utilization of these repositories.


Description of the SRP Project/Problem

This Scientific Research Project aims to investigate the requirements and expectations for metadata deposition and retrieval from an institute-wide FAIR Data Point by:

• Conducting a scoping review on and assessment of existing institute-wide FAIR Data Points or other metadata repositories for (clinical) research projects.

• Identifying strengths and weaknesses of found implementations, specifically related to (meta)data deposition and retrieval processes.

• Investigating researchers' expectations and potential barriers when depositing metadata into FAIR Data Points or searching for research data.


Research questions

• What are key requirements and expectations of researchers concerning (automated) deposition of metadata into an institute-wide FAIR Data Point?

• What concerns or barriers do researchers perceive when sharing metadata through a FAIR Data Point?

• What are researchers' preferences for search functionalities and (meta)data accessibility when retrieving research (meta)data from a FAIR Data Point?


Expected results

The intended result of the SRP is a (publishable) scientific article and advice report describing recommendations for institute-wide FAIR Data Points.


Time period

7 months


References

1. Wilkinson MD, Dumontier M, Aalbersberg IjJ, Appleton G, Axton M, Baak A, et al. The FAIR Guiding Principles for scientific data management and stewardship. Sci Data 2016;3. https://doi.org/10.1038/sdata.2016.18.

2. van Reisen M, Stokmans M, Basajja M, Ong’ayo AO, Kirkpatrick C, Mons B. Towards the Tipping Point for FAIR Implementation. Data Intelligence 2020;2:264–75. https://doi.org/10.1162/dint_a_00049.

3. da Silva Santos LOB, Burger K, Kaliyaperumal R, Wilkinson MD. FAIR Data Point: A FAIR-Oriented Approach for Metadata Publication. Data Intelligence 2023;5:163–83. https://doi.org/10.1162/dint_a_00160.

4. LUMC. LUMC FAIR Data Point [Internet]. 2022 [cited 2023 Jul 31]. Available from: https://fdp.lumc.nl