Meeting Objectives are as follows:
Inform the attendees of the working group mission and ongoing work of mapping the clinical data services
Identify gaps in the work, with a specific interest in understanding the service needs from geographical areas and research sectors beyond the original working group
Increase corpus of test cases and resources to have a more informed WG output
Build Working group Engagement and Membership
Collaborative session notes: https://docs.google.com/document/d/1pDILTf_a8Vik_8HdsHXQv9hDs8naTVXHRPJSiad9j38/edit?usp=sharing
Brief introduction of previous work
This interactive session will utilize meeting chairs to work with session attendees in small groups to review the high level workflow descriptions of one or more data curation activities (data access, query, extraction, transformation, cleaning, aggregation, and sharing).
Participants will self-select into breakout groups focused on one of three aims:
Evaluation of existing workflow phases, terminology, and associated materials
Evaluation of metadata schema and relevant ontologies
Creation of potential use cases, test cases, and adopters
The attendees will reconvene to a single group where results from the breakout session are reported for each group.
The moderator will present the current status of work in this area and a description of the small group hands-on session, including tasks for each group to complete.
The final portion will be a group discussion of the working group management, roles, next steps, and logistics
For this open session, we invite researchers across health-related sciences using data-driven analytical techniques in their research life-cycle; Healthcare Data Scientists dealing with data mining, machine learning, physiological modelling and image processing technologies and the data these produce; Policymakers for Healthcare; Health bioinformatics legal experts; Healthcare and Health Maintenance Organisation administrators; Pharmaceutical industry researchers and manufacturers; and, participants form other related WG/IG.
Biomedical data are a valuable resource for research and other secondary use purposes. However, due to its nature, biomedical data reside in distributed data repositories in various forms (e.g., written reports, structured data, semi-structured data such as genomic tests, imaging). Finding, selecting and integrating the research data for a given research question requires a set of data curation activities including data access, query, extraction, transformation, cleaning, aggregation, and sharing. Each of these steps in the data lifecycle impacts the scope and coverage of the resulting curated data set. For reproducible research, research data curation services should be clearly documented, if possible in a machine interpretable way, and should be accessible beyond the lifetime of the data curation process.
While a nascent RDA working group, this draft work began 12-months ago within the RDA Health Data IG and one workshop at AMIA (https://www.amia.org/)
We have submitted our working group case statement and are currently in discussion with members to address case statement revisions. Work surrounding our group's aims have been underway within a task force within the Health Data IG, though is just beginning within the wider RDA community.