About the Nightscout Data Commons on Open Humans
Members of the Nightscout community have frequently expressed the desire to donate their diabetes data for scientific research; or to perform research themselves to better understand various diabetes treatment approaches. The Nightscout Data Commons was created to enable a simple way to share data sets from the community, both with traditional researchers who will create traditional research studies, and with groups or individuals from the community who want to review data as part of their own research projects. The Nightscout Data Commons uses the "Open Humans" platform to enable people to easily upload and share their data.
Who is running the Nightscout Data Commons?
There is a volunteer Research Committee of the Foundation, made up of four members of the Nightscout community and one member of the Nightscout Foundation Board of Directors, that will act as administrators of the Nightscout Data Commons. The committee can be contacted via firstname.lastname@example.org.
How do I participate in the Nightscout Data Commons?
There are two steps to adding your data to the Nightscout Data Commons:
- Click the Share My Data button to the right and transfer your Nightscout data to your Open Humans account. If you don't have an Open Humans account, the tool will guide to the sign up page.
- On the Open Humans site, visit the Nightscout Data Commons project page and add your data.
You may occasionally get an e-mail from the Commons Commitee asking you to refresh your data. To do that, you'd simply re-run the Data Transfer tool.
Who is allowed to access data from the Nightscout Data Commons?
As a default, data shared with the Nightscout Data Commons is aggregated and kept private. The community administrator(s) will decide as requests emerge which projects are allowed to ultimately access data from the Nightscout Data Commons. The community has agreed upon these criteria to determine what constitutes a research project, study, or activity that they would like to have access to data from the Nightscout Data Commons.
Research Criteria Requirements
- Sharing insights, data, and/or analysis back with the Nightscout Community in a reasonable time frame.
- This is a requirement of special importance if any research findings have direct and immediate impacts on participants’ lives. I.e. if you find a bug in code, or otherwise find something that would significantly impact someone, members of the community should be informed immediately.
- Information, data, insights, and/or analysis based on, or related to, data from the Nightscout Data Commons must be published in a relatively open manner.
- This may mean partnering with members of the Nightscout community to publish relevant details to the Nightscout Foundaition's Research blog/site so it is freely accessible to the community. We have previously worked with traditional publications to adapt copyright agreements to make clear when information is already in the public domain, even if the traditional publication is the main venue for sharing this data with the academic or medical communities. If a journal is firewalled, this also means making images and/or PDFs available to members of the community if the content is not able to be published freely without a paywall otherwise.
- Willingness to be included on a list of projects that are accessing the Nightscout Data Commons list.
- This is so individuals who are not ready to donate to the general Nightscout Data Commons but are generally interested in contributing their DIY closed loop data can find out about, and donate data to, your project.
Research Criteria Recommendations (Optional, but Recommended)
While not required, members of the Nightscout believe in patient-centered, -driven, and -designed research and we recommend directly involving patient community members in the design, implementation, and all other steps of research. With this in mind, volunteer members of the community are willing to serve as Co-PI, advisors, and/or co-authors for publications about data related to the Nightscout Community.
Applying to Access Data from the Nightscout Data Commons
- Interested researchers should first create a project on Open Humans for their project.
- Note that Open Humans states that any project classified “study” should have IRB approval; so if you require IRB approval for research, you should be creating a “study”. If you are an (n=1) or researcher that does not require IRB approval, you will create a project that is an “activity.”
- Interested researchers should fill visit the Nightscout Data Commons Access Request page to propose their research activity or study and provide relevant details and other requested information.
- After receiving the form, the Research Committee will review for completeness and contact the individual if any additional information is needed.
- The Committee will evaluate whether the research activity meets the community’s criteria and should be allowed to access the Nightscout Data Commons data.
- The Committee will communicate the decision back to the interested researcher.