OpenAPS Data Commons on Open Humans

Introduction

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.

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 dana@openaps.org for any questions, concerns, or input about the data commons.

Am I required, as a DIY closed looper, to share my data?

No. This is completely voluntary, and should not impact your personal decision to DIY closed loop or your existing ability to do so.

Are there any alternatives?

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.

Project Procedures for the OpenAPS Data Commons

This study will allow you to publicly share data you have added to your Open Humans account. You can choose which data to share and you may remove public sharing status for any given data set at any time. When you share data publicly, it is associated with your member profile. Therefore, you may want to pick a username for your profile that is not your name if you do not want your profile to be readily identifiable.

Data you may choose to share publicly might include:

• Data you bring to Open Humans from third parties (such as your Nightscout data)
• Data collected directly through online surveys and other methods
• Research data returned to you by researchers

What will be required of me as a participant?

• The only requirement is that you keep your contact information (e.g. email address) up to date.
• You may upload one set of data and decide to not take any additional action; however, you may also be contacted in the future with requests to upload additional batches of data in the future (every 6 months or so) or with requests from new research studies or projects to fill out an additional survey. These will be optional.

How will you protect my privacy?

OpenHumans, and the OpenAPS Data Commons, cannot guarantee privacy. The data you choose to share may be identifiable, and the data you share publicly is connected to your username. Therefore, you may not want to create a username that matches your name. We will not remove all identifying features from your imported data. (However, note that if you use the "Nightscout Data Transfer" to upload your Nightscout data, "entered by" and "device" field and other common identifiers will be replaced with a random identifier.) Otherwise, it will be your responsibility to determine when to share your data. You should review imported data for the presence of personal information before choosing to make it public. Information you share privately with this data commons and with the Open Humans website will be kept confidential (e.g. if you privately tell us your email or home address, we will not share these).

(Make particular note that the organizers of the data commons are based in the U.S. If you reside outside of the U.S., you are welcome to donate your data but it is not guaranteed to be in accordance with every country’s applicable internet privacy laws. You should factor this in to your decision to donate your data or not.)

Will I be compensated for sharing my data?

No. In the future, some research studies that access the data commons may have protocols to compensate individuals for participation in individual studies. However, the OpenAPS Data Commons in general will not compensate you for sharing your data.

What are the risks of donating my data to the OpenAPS Data Commons?

The main risks of participation are related to data sharing. It is hard to anticipate all the risks of harm that may be involved, but the main risk would be re-identification of the data at a later date. Data you are currently comfortable sharing might become sensitive later; your personal circumstances might change; etc. To mitigate the risk, you may want to create a username that does not match your name and is not one you commonly use on other sites; and also to consider if there are any detailed identifiers embedded in your data that you may want to change before uploading your data. (Note that if you use the "Nightscout Data Transfer" to upload your Nightscout data, "entered by" and "device" field and other common identifiers will be replaced with a random identifier, but you may have other detailed identifiers you could choose to do a "find and replace" on before uploading your data.)

What are the benefits of donating my data to the OpenAPS Data Commons?

There are no financial compensation or direct benefits; but we believe public data sharing from the community will more easily facilitate additional studies and progress around diabetes treatments and therapies. These advances may indirectly benefit you as part of the community of people with diabetes.

Data management specifics

• We will access and store the following data from Nightscout: BG data from CGM; treatments data; any other Care Portal entries or notes. The main purpose of the OpenAPS Data Commons is to gather DIY closed loop-related data for research.
• We will not store individual names; usernames; or Nightscout URLs. Those uploading data to OpenHumans will be assigned a random, eight-digit identifier that will be used to anonymize the data collected.
• Raw data will be managed privately, accessed only by project (data commons) administrators and other authorized individuals. To further improve security, this private data will not have your name or username associated with it, although it is possible someone could identify you from the data.
• The OpenAPS Data Commons was created to easily facilitate data sharing from and with the OpenAPS community. Anyone using a DIY closed loop is welcome to donate their data to the data commons. We encourage other studies or projects (including n=1 research, or research by individuals in the community) to access this data, as long as it means the community principles for sharing results back to the community in a reasonable time frame and relatively open manner.
• You may remove your data from the OpenAPS Data Commons (and/or OpenHumans) at any time; however, if your data had previously been shared with researchers for a study, the data may have already been shared. If you would also like your data removed from any research projects or studies it has been shared with, please contact the data commons administrator and we will do our best to remove your data set from the data being used for those particular studies or projects.

How can I contact someone to ask more questions about the OpenAPS Data Commons?

Please contact the OpenAPS Data Commons Administrator (Dana Lewis) if you have any questions about this project and your part in it, or if you have any general questions, concerns, or complaints about this research. She can be reached via dana@openAPS.org

Consent Statement:

I have read this consent form. I understand that I can refuse to participate in this project. I have taken time to think carefully about my decision to participate. I freely consent to share my data with this research project.

By clicking "agree" below, you are e-signing this form and agree to the following:

-I understand the uncertainty and risk of research as stated in this consent form.

-I understand that data I choose to publicly share may be used for any purpose, including research purposes.

-I understand that once I authorize public data sharing, data privacy laws might not apply or no longer protect my information.

-I understand that I can withdraw data from Open Humans at any time, but copies of that data that have already been made by other people may remain.