About the OpenAPS Data Commons on Open Humans
(last updated June 6, 2017)
Members of the OpenAPS community have frequently expressed the desire to donate their DIY closed loop data for scientific research; or to perform research themselves. The OpenAPS 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 OpenAPS Data Commons uses the “Open Humans” platform to enable people to easily upload and share their data.
Who is running the OpenAPS Data Commons?
Dana Lewis has volunteered to serve as the administrator of the data commons for the OpenAPS community, following the general principles of the community to make data and knowledge easily accessible and shared from and with the community. She can be reached at firstname.lastname@example.org for any questions, concerns, or input about the data commons. She will work with a volunteer group from the community to determine which projects or activities access data from the OpenAPS Data Commons.
Are there any alternatives to uploading data to Open Humans?
Any research projects or studies that will access OpenHumans data from the OpenAPS Data Commons will create their own “project” on OpenHumans, and be granted access to the data. Therefore, if you do not want to donate your data to the OpenAPS Data Commons but DO want to share your data for research, you can donate your data individually to each/any of the research projects for which your data qualifies. The OpenAPS Data Commons will do their best to keep a public, updated list of which research projects and studies are utilizing the OpenAPS Data Commons, in order for individuals to also individually donate their data.
Who will access data from the OpenAPS Data Commons?
You can see the detailed research criteria here, and if you’re an interested researcher how to submit a request to access data from the data commons. In summary, the criteria to accessing data from the OpenAPS Data Commons includes 1) agreement to share insights and anything learned from data back to the OpenAPS community; 2) general agreement to approach publication and sharing of any data or associated insights in as open and transparent of manner as possible. (This may mean agreeing to post some aggregation of data or insights summarized via an OpenAPS.org blog post in order to make the information reasonably accessible to the community; in addition to pursuing more traditional forms of presentation or publication). We will also keep an updated list of which projects or people are accessing the data.
How does sharing data with the OpenAPS Data Commons on Open Humans work?
High level process (for full details, see the documentation here):
- Create a profile on Open Humans. Keep in mind that your name/username can be public; so you may want to choose a non-name related username.
- Verify your profile (see Open Humans email confirmation).
- Use the Nightscout Data Transfer app to upload your Nightscout Data into Open Humans. (Nightscout URL is not stored in any way, so your privacy is protected.)
- Search for the OpenAPS Data Commons on Open Humans; or click here to go directly to the OpenAPS Data Commons project.
- Agree to share your data with the OpenAPS Data Commons.
- You will then be directed to a survey to also provide basic data to be added to the data you uploaded – please also fill out this survey. (This data will be tied to your OH data shared with the Data Commons, which should prevent having to answer the same questions (i.e. how long you have had diabetes) on any future research studies that have questionnaires.)
- Hooray! You’ve just added data to the OpenAPS Data Commons.Thank you for contributing your data! Please note:
- We may contact you in the future (we will not see your email address, but will message you via Open Humans) to request to upload a new batch of data or fill out a survey for another research study that is accessing the Data Commons data.
- Per the Terms and Conditions, you can always choose to delete and remove your data from Open Humans, or pull it from the OpenAPS Data Commons. Some data may have already been shared with individual research studies. However, if you contact email@example.com, we will also do our best to remove it from any active/ongoing research studies.
Existing or ongoing studies using the OpenAPS Data Commons
- A retrospective outcomes study is currently ongoing with Johns Hopkins (IRB00121066). The first data collection pull for this study from the OpenAPS Data Commons will happen after June 16, 2017.
- A predictive algorithm comparison study is currently ongoing with Stanford (e-protocol #40306).