Value of making data F.A.I.R. to respond to infectious disease emergencies
Submitted by Priyanka Pillai
- Collaborative Notes Link: https://drive.google.com/open?id=1MCpgnNuxSIQbBUCMZVUrump8kJNKhCFh49mXE9...
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 or interest group 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 Outbreak Data Analytics (IDODA).
1. Introduction to infectious diseases data ecosystem and challenges associate with bringing data together for analytics - Priyanka Pillai (20 mins)
2. Infectious diseases data analytics - Dr Freya Shearer (20 mins)
3. Discussion on how we can resolve some of the challenges (15 mins)
4. Infectious Disease Outbreak Data Analytics (IDODA): What would an ideal IDODA toolbox look like? - (20 mins)
5. Discussion on next steps forward: Establishing an Interest Group (15 mins)
6. Meeting close
A literature review was undertaken to summarise existing practices in infectious diseases data management in Australia and internationally. The scoping work includes expert contributions from infectious diseases research, health informatics, bioinformatics and information systems.
The literature review and scoping exercise 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 Five Safes Framework (Projects, People, Data, Outputs and Settings) is an accountability framework to inform decisions about data usage that can be used as an effective framework for highly political and time-sensitive scenarios such as infectious disease emergencies. There are international exemplars of platforms that rapidly collect and disseminate data to inform public health responses. Globally, the health and medical research strategic plans emphasise enhanced data collection, efficient reporting systems and building advanced infrastructure to respond to infectious diseases emergencies in a timely manner.
The conclusion is that the challenges in sharing and aggregating data can be addressed by building trust among data custodians, promoting collaboration and implementing 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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