How to Participate in the Nightscout Data Commons on Open Humans

About the Nightscout Data Commons and 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. For more information, visit the Data Commons page. 

How to Add Your Data to the Nightscout Data Commons

The actual transfer and joining of the project is a three step process: Creating an Open Humans account; Transferring your Nightscout data into your Open Humans account; and Sharing Your Data with the Nightscout Data Commons.

Open a Profile on Open Humans

  1. Visit the Open Humans website. 
  2. Create an account. Remember that your name and username might be public, so choose carefully.
  3. Be sure to verify your Open Humans account via the e-mail they will send.

Transferring Data from Nightscout to Open Humans

  1. Go to the Nightscout Data Transfer App webpage
  2. Verify you are logged in to Open Humans
  3. Scroll to the bottom and click “Connect Nightscout Data Transfer.” It will take you to a page and ask for your Nightscout URL. Note the app DOES NOT store your URL but will just use it to fetch the data from Nightscout.
  4. Select the date range you want it to fetch data from. Tip: Start with two days or so of data to test that it works; you can then re-upload with a longer time frame of data. If you want to upload ALL of your data (yay!), then don’t put a start date. However, this will take a while, so don’t expect it to be done in minutes, but may take upward of half an hour to an hour depending on how much Nightscout data you have - this is normal.

It will say “Queued” on the page. You can refresh, and it should soon say “Initiated”. It may take several minutes to pull even a few days worth of data, so keep refreshing the page or come back later. Once done, it should show you a list of files that it has pulled, and provide download buttons if you want to download a local copy or open it to check that it correctly pulled data. Your screen should look like this:

 
 

In a minute or so, refresh the page. You should see a "Querying..." message. If the message read "Failed," check your inputs and try it again. The dates and website entries are very particular about formatting. Give it a go and refresh after a few minutes, you should see a green status bard and something like this:

 
 

You can always go back to the Nightscout Data Transfer App on Open Humans to see what data it has transferred. It should look something like this:

 
 

Should you ever want to update your data, visit the transfer tool directly by clicking here and walking through the process again. With data in your account on Open Humans, you're ready to add it to the Nightscout Data Commons.

Sharing Data with the Nightscout Data Commons

  1. Visit the Nightscout Data Commons project page on Open Humans by clicking here.
  2. Scroll down and look for the "Join Nightscout Data Commons" button on the bottom of that page. Before you do, please be sure to read and understand the consent items listed. If you have any questions before joining, feel free to e-mail research@nightscoutfoundation.org
  3. Agree to share your data with the Nightscout Data Commons.
  4. You will be redirected to a survey that will provide basic data about the person associated with the Nightscout data. This data will be tied to your Open Humans 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.
  5. Appreciate our thanks. You have just joined in one of the first patient driven data centers in the T1D community, and we thank you from the bottom of our hearts.

Please note, at some point in the future, we may ask you to update your information. We will do this through the Open Humans communication system. We never see your e-mail. We may also ask you to fill out another survey if one of the researchers we have approved to use the Commons has more detailed questions that would aid in their research.

Remember, you can always choose to delete and remove your data from Open Humans, or pull it from the Nightscout Data Commons. Some data may have already been shared with individual research studies. However, if you contact research@nightscoutfoundation.org, we will also do our best to remove it from any active/ongoing research studies.

Now What?

Now that you have data on Open Humans, you can share it with any project that interests you! There is a OpenAPS Data Commons tracking many of the same data points, but with additional closed loop information, and there are projects that would love to learn more from your Fitbit or Moves data. Explore a bit and see where else you can help out!

Any time you want to know who is accessing the Nightscout Data Commons, you can visit the project page on Open Humans. That will list projects that have been approved for access.