How to donate your data to research with the OpenAPS Data Commons in OpenHumans¶
About the OpenAPS Data Commons and OpenHumans¶
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.
For more background, see the OpenAPS.org Data Commons page.
(Tip: you may want to right click and open any links from this page in new windows.)
How to upload your data to the OpenAPS Data Commons¶
- A. 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.
- Make sure to verify your profile (see Open Humans email confirmation).
- B. (Optional, but recommended method for getting your data into OpenHumans). Use the Nightscout Data Transfer app to upload your data into
- 1. Go to the Nightscout Data Transfer App webpage
- 2a. NEW USERS: Scroll down to the bottom of the page and click “Connect Nightscout Data Transfer”. (Log in to your OH account first if you haven’t already).
- 2b. REPEAT USERS: Go here: https://dataxfer-ns-oh.herokuapp.com/ . (Log in to your OH account first if you haven’t already).
- 3. 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. 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.
- Warning: 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:
When completed, after refreshing the status bar should turn green and look something like this:
- You can always go back to the Nightscout Data Transfer app and see what data it has uploaded for you. It should look something like this:
- C. Now that you have data in Open Humans, next click here to go directly to the OpenAPS Data Commons project.
- 1. Scroll down and click “join”. Carefully read the terms & consent to make sure you understand how your data is going to be used. You can also read the OpenAPS Data Commons research criteria here to better understand what criteria research projects are held to before they may be granted access to the data commons data. Note: the data will not be publicly available; it will only be shared privately and securely with individuals or research groups that meet this criteria and are vetted by a volunteer group from our community.
- 2. Agree to share your data with the OpenAPS Data Commons.
- 3. You will then be redirected to a survey to also provide basic data to be added to the data you uploaded – please also fill out this survey information. (This data will be tied to your OpenHumansdata 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.)
- 4. 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) 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 firstname.lastname@example.org, we will also do our best to remove it from any active/ongoing research studies.
Notes about OpenHumans and other data¶
You can also donate your data to places like the Nightscout Data Commons (once it is finished), or any other research project you find interesting on Open Humans. Make sure to read the terms and conditions clearly for each of the research studies you donate your data to, and in particular look for what types of data they may be asking you to share. In addition to Nightscout data, you can upload things like Fitbit or Moves data, etc. to Open Humans.
Frequently Asked Questions¶
- I filled out the survey. What next?
You’re all done! (For now. In the future, studies accessing the OpenAPS Data Commons may choose to send additional surveys to collect things like various QOL metrics, which you can choose to participate in or not.) Thanks for donating your data!
- How much data should I donate?
You can donate as much as you want, or as little as you want. However, many of the studies are interested in looking at before/after looping - so at a minimum, I’d suggest a month or two before you started looping. If you don’t have any reason to limit what you share, I’d suggest sharing all of your Nightscout data to make it the most useful to all potential researchers. (This means don’t bother to put a start or end date in the Nightscout Data Transfer tool; just put in your URL and hit upload.)
- Who is accessing the data?
Any project from OpenHumans accessing the OpenAPS Data Commons should be listed on the page. We’ll also keep a list going (probably here, on the OpenAPS.org Data Commons page) to reflect the different studies using the data.