Make a big impact on diabetes research

Whether you’re creating a Tidepool account for the first time, or you’re an existing Tidepool user, donating your data is easy. You can follow these step-by-step instructions to get set up.

We remove identifiers and anonymize data in these ways:

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For each user:

• Included: The month and year of birth and diagnosis
• Not included: Name, address, email address, exact birthday, exact diagnosis day, notes, photos, customized basal profile names or other personally identifiable information

For all diabetes devices:

• Included: Device event and data timestamps
• May be included: Brand and model of the device (some device makers preclude this)
• Not included: Device serial number

For blood glucose monitors:

• Included: Blood glucose (BG) readings

For continuous glucose meters (CGM):

• Included: Estimated glucose values, events tracked by the CGM, including meals, insulin, calibration, exercise

For insulin pumps:

• Included: All pump settings, including bolus calculator parameters, basal rates, insulin to carb ratios, and insulin sensitivity factors as well as all events tracked by the pump, including meals, insulin dosed, temp basals and suspends events, primes, and BG inputs

Note: Some of the terms above may have slightly varying language on your device.

We will not include in the anonymized datasets (1) freeform text and notes entered by you or your Care Team Members, or (2) any other data that could identify a specific individual.

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See our Privacy Policy for more information.

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After anonymizing and removing all identifying information, the data we provide researchers is in either .csv, .json, or .xlsx format that looks like this.

We store data in Tidepool’s secure, HIPAA-compliant servers that are hosted by Amazon Web Services (AWS). Within AWS, we use MongoDB, a popular, modern database.

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Here is an example data file (6MB compressed) for our demo user, “Jill Jellyfish" before anonymization and removing identifiers. It follows the Tidepool data model (the way we internally represent data) here.

Tidepool uses industry best practices, including end-to-end encryption, to secure your data. You can read detailed information all about our security infrastructure in this document.

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For the Tidepool Big Data Donation Project, Tidepool strips all identifying information from anonymized data sets. In addition, Tidepool replaces your Tidepool user identifier (that looks something like 0a1b2c3d) with a “hash” value that is generated using a cryptographically secure one-way hash function. These identifiers cannot be decrypted into their original form, even by Tidepool, but they allow researchers to correlate anonymized datasets over time from the same user.

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We take great safeguards to prevent hacks and data breaches, and it has never occured. If a data breach were to occur, we would follow HIPAA guidelines for notifying our user base about the details of the breach.

At any time after you have opted in, you can choose to opt out. After you’ve logged into your account, click on the account name at the top of the page to navigate to your profile settings. Remove any nonprofit diabetes organizations you’ve selected to receive 10% of proceeds generated by your data donation.

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Uncheck “Donate my anonymized data” and click “Save.” If you opt in, and then later change your preference to opt out, you will not be able to remove or delete data that had been previously donated.

We will make a portion of the data donated to the Big Data Donation Project available for free. We also recommend you take a look at the OpenAPS and Nightscout Data Commons project.