What is the Pediatric Sepsis Data CoLaboratory?
The Pediatric Sepsis Data CoLaboratory (Sepsis CoLab) is an international data-sharing network for collaboration to address pediatric sepsis mortality and morbidity. It is led by the Centre for International Child Health (CICH) at BC Children’s Hospital and the World Federation of Pediatric Intensive and Critical Care Societies (WFPICCS). To contribute towards the prevention of sepsis-related deaths and disability we need to collect accurate information on patients to support health care workers in making individual treatment decisions. In addition, analyzing this data can help hospitals gain insight into facility-wide processes, leading to a better understanding of the safety, quality and efficiency of their care. This international network shares information and data to further shared priorities among collaborators to improve sepsis treatments and outcomes.
What are the Sepsis CoLab’s focus areas?
- Patient and facility data – develop tools to enhance the collection of relevant, accurate data for research and quality improvement.
- Mobile and web applications – develop tools to inform, diagnose, advise and plan for improved outcomes using low-cost mobile technologies.
- Modelling and analytics – share and use information and data to draw conclusions about the best courses of action
- Advocacy and prevention – advocate on a facility, national, and global scale for improved guidelines and practices for improved early recognition of sepsis.
Why join the Sepsis CoLab?
By joining the Sepsis CoLab, you will have the opportunity to collaborate with pediatric clinicians and sepsis experts from around the world and contribute towards advancing pediatric sepsis research and practice.
What are the benefits of membership?
Sepsis CoLab members are provided with networking opportunities and mentorship as well as access to a host of resources shared through our Dataverse including guidelines, readiness assessment tools, algorithms, draft quality improvement (QI) and ethics applications and many more. Access to more sensitive files (e.g. patient data) is limited to individuals participating in active research collaborations, and may be obtained by contacting our Project Coordinator. Contact information is found here under “Collaborate with the Pediatric Sepsis CoLab.”
How can I become a member of the Sepsis CoLab?
To become a member, individuals must complete our brief membership application, create a Dataverse account, and sign a Memorandum of Understanding (see the membership application for more details).
Who can become a member of the Sepsis CoLab?
Anyone interested in pediatric sepsis and care of critically-ill children can become a member.
My organization is not a member of WFPICCS, can I still join the Sepsis CoLab?
Yes! Anyone interested in pediatric sepsis can join by completing our brief membership application here.
Does my membership roll over or do I need to renew?
There is no need to renew your Sepsis CoLab membership. Once you have applied and been approved by an administrator you will acquire access without expiry.
How can I get involved once I am a member?
After becoming a member, we encourage you to get involved with the Sepsis CoLab by sharing your data, collaborating on an existing project, or by utilizing the resources available in your own research or quality improvement projects. Dataverse acts as a platform for a wide range of collaborations.
How can members contribute?
We welcome members to share data within the CoLab. To become a contributor, members must sign a Data Sharing Agreement with the Sepsis CoLab.
How can members collaborate?
The Sepsis CoLab is intended to spark collaboration among sepsis-related research groups. Those interested in collaborating with our network need to submit a project proposal to be reviewed by our Steering Committee. If approved, members must sign a Data Sharing Agreement.
Sepsis CoLab’s Scholar’s Portal Dataverse
What is the Sepsis CoLab’s Scholars Portal Dataverse?
Scholars Portal Dataverse is a secure open-source data repository (virtual archive) hosted in Canada.
Through the Sepsis CoLab’s Dataverse, members can:
1) Access guidelines, tools, algorithms, mobile applications, and many other resources.
2) Access and share data through data sharing agreements.
3) Securely store data.
Why is it important to collect and share data?
In under-resourced countries, data collection is often challenging. Routine data collection and coordination will help to develop and validate tools for continuous quality improvement of care in health facilities across the world.
Who will benefit?
Targeted, investigator-driven initiatives within the network are being used to improve sepsis treatments and outcomes. It is expected that health care providers, patients and their families will benefit from this continuous quality improvement.
Do I need to be a member of the Sepsis CoLab in order to contribute to the CoLab’s Dataverse?
Yes. In order to deposit your own data to the CoLab’s Dataverse you must first become a member. Affiliated faculty, clinicians, and researchers who are members of the CoLab gain access to resources such as project proposals, data collection tools, and summarized reports. Without membership, access is limited to publicly available documents such as guidelines and open access publications.
How can I access resources or upload my data to the Sepsis CoLab’s Dataverse?
Instructions for uploading and/or downloading data can be found within our Dataverse here.
How am I recognized for my contributions to the Sepsis CoLab?
Sepsis CoLab members who contribute resources or collaborate on the development of resources are given credit for their work in the asset’s metadata on Dataverse.
What is an asset’s metadata on Dataverse?
Metadata provides information about each asset (resource) on Dataverse. This includes the asset’s title, authors list, contact information, description, keywords, and digital object identifier. The metadata is used to create a reference for the asset that can be cited in research articles and other resources.
What is a digital object identifier?
A digital object identifier (DOI) is a code that uniquely identifies an asset (resource) which makes it easier to find assets online. A DOI is automatically generated for every asset on Dataverse.
Does Dataverse have any associated costs?
There is no direct cost to researchers or other users. This Dataverse is a shared service provided by Scholars Portal on behalf of the Ontario Council of University Libraries. Additional funding support for Scholars Portal Dataverse has been provided by CANARIE and The Portage Network.
What types of files are supported?
Dataverse supports the uploading of any file type. However, this service is intended for sharing research data and is optimized for research data types and formats.
Is my data protected?
Any data uploaded to Dataverse can have access restricted to authorized users. Scholars Portal has additional security measures in place to protect your data from others who wish to exploit or access data that they are not authorized to. For further information on data restrictions, visit the Advanced Dataverse User Guide.
What is open data?
Open data is data that anyone can access, use and share.
What is data?
Data are unstructured facts and figures collected together for reference and analysis. Data can be thought of as the raw material used to generate information – much like raw construction materials are needed for building.
What is information?
Information is data that has been given context. Context is given by asking specific questions that address specific needs. Data is given context by these questions in the same way that construction materials are given context when they are used to build something.
Why is open data important?
Open data is important because in the past data was typically collected by a single group, used to address a specific set of questions, and then archived and rarely ever used again. This type of restricted access means that only those with the resources to collect data were generating information and creating knowledge. Furthermore, this method of data collection results in lost opportunities for others to learn and contribute.
Not everyone who has questions has the resources to collect data in the first place. By allowing data to be accessed and reused freely more people are able to generate the information required to answer their unique questions. This type of access can help create a more equitable creation of new knowledge.
Opening up data provides a way to leverage scarce resources, allowing broader access, leading to more discoveries, without costly investments. This approach is key to addressing inequities and improving health outcomes for individuals everywhere.
What are the FAIR Data Principles?
The advancement of digital science thrives on the timely sharing and accessibility of digital data. The FAIR Data Principles were established as a set of guiding principles in order to make data Findable, Accessible, Interoperable and Reusable.
FINDABLE data has unique properties that allow it to be found easily and reliably, including sufficiently rich ‘meta data’ or “data about data.”
ACCESSIBLE data ensures that the metadata and data are easily understood by humans and machines and are held in a trusted repository.
INTEROPERABLE data uses a formal, accessible, shared, and broadly applicable language for knowledge representation. This means that there is a shared understanding of what the data actually represents.
REUSABLE data has clear usage licenses and provides accurate information about the origin, authenticity, and quality of the data.