RDA Reproducible Health Data Services Working Group
Purpose: Revised Case Statement for application as RDA Working Group: https://www.rd-alliance.org/sites/default/files/case_statement/Reproduci...
*This revised charter dated 29 March 2020. Previous and revised charters can be found attached below*
Reproducible Health Data Services WG Charter
The goal of the working group is to enhance the reuse of health data for research and improve the FAIRness levels of aggregated and curated data sets for secondary use by providing recommendations to enhance the reproducibility of data curation services.
Processes of health data curation are often conducted by data service proiders within centers of health informatics, health data brokerage, or health stastics, all such centers we aim to include in the ambit of "health data services".
Examples of health data service stakeholders include: health data curation centers, medical data services, clinical data integration centers, biostatistics and system medicine institutes, and other data centers who assimilate, manage, and distribute health data for various primary and secondary uses such as research, innovation, quality assurance and improvement, and efficiency monitoring. Health data services facilitate the use and reuse of data in different contexts surrounding health care and health research. The data span across biomedical domains, including clinical, genomic, and patient generated health data repositories.
The actors involved in data services perform many tasks such as data curation, mapping, integration, and publishing. These interdependent tasks build upon each other to create workflows that transform siloed data into new, curated datasets, requiring the navigation of data interoperability, data quality, and data security. Thus, understanding these health services processes is vital to support reproducibility and ensure FAIR data practices.
The case statement outlines our work and provides the focus and the boundaries for the working group activities.
The following stakeholders will potentially benefit from our contribution:
- Data curators/brokers in their daily activities
- Data consumers (e.g., clinical researcher, application developers, innovators)
- Health research data repositories or archivists
- Health research funders
The benefits may include the ability to reuse processes, gain credit for work, provide transparency, and facilitate machine readable workflows pertaining to the collection, cleaning, and curation of health data for analysis and sharing.
The RDA Reproducible Data Services Working Group (i) will provide recommendations to identify, capture, and store metadata documenting workflows for collecting and curating health data for secondary reuse, and (ii) will develop an adoption and training guide to improve the uptakes of our outputs.