Submitted by Priyanka Pillai
The infectious diseases data ecosystem is comprised of information from a range of sources like general practices, jurisdictional surveillance systems, clinical research, emergency departments, diagnostic laboratories, epidemiology studies and genomics. Past public health and infectious disease emergencies have demonstrated the challenges associated with rapid aggregation, integration and sharing of data to inform a response. It is essential to improve data collection, facilitate data sharing and support data usage for decision-making in the infectious diseases community. The objective of this meeting is to establish a working group and/or a Community of Practice (CoP) that will jointly work towards improving the infectious disease data management practices and build a community of practice around making data F.A.I.R for Infectious Disease Data Management and Analytics (IDDMA).
Collaborative Notes Link: https://docs.google.com/document/d/14ODLJjFcAIbhIQ4iDenUnmQVd2X295PfUbP9...
1. Introduction to infectious diseases data ecosystem and challenges associated with managing data for analytics (Presenter - 10 Priyanka Pillai, University of Melbourne)
2. Guidelines and recommendations to resolve some of the challenges – Lessons from RDA COVID-19 Working Group (Presenter - 20 mins Natalie Harrower, Digital Repository Ireland)
3. Infectious Disease Data Management and Analytics (IDDMA): What would an ideal IDDMA platform look like? (10 mins Priyanka Pillai, University of Melbourne)
4. Workshop (30 mins) (3 x Breakout rooms)
Infectious disease data: An open discussion on the types of infectious disease data in your area of work/research
Challenges: What challenges have you experienced in this context?
Strategies: Ideas, solutions and shareable resources
5. Discussion on next steps forward: Establishing a Working Group and/or a Community of Practice (20 min, Facilitated by Mark Leggott, Research Data Canada)
Workshop summary (5-7 mins)
Call for contributors and leaders
6. Meeting Close
Short introduction describing any previous activities:
Priyanka Pillai, Mark Leggott and Natalie Harrower are active members of RDA and are co-chairs of the RDA COVID-19 Working Group. The RDA COVID-19 Working group addressed the development of detailed guidelines to aggregate different data sources in any common data hub or platform. The guidelines aimed at developing a system for data sharing in public health emergencies that supports scientific research and policy making, including an overarching framework, common tools and processes, and principles which can be embedded in research practice. The guidelines to be developed will address general aspects related to the principles the data should adhere to (FAIR and other principles). Priyanka Pillai undertook an extensive literature review and scoping exercise in 2018 and found that there is global support for making public health data available under F.A.I.R. (Findable, Accessible, Interoperable and Reusable) Principles to support knowledge integration, innovation and discovery.
The conclusion is that the challenges of sharing and aggregating infectious disease data for analytics can be addressed by building trust among data custodians, promoting collaboration and implementing robust data stewardship practices. The infrastructure solutions to leverage big data in infectious diseases should be agile, comply with ethical requirements and legislation, facilitate equitable data access and expedite cross-border data sharing globally.
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Priyanka Pillai, Mark Leggott, Natalie Harrower
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