Tidepool Big Data Donation Project

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Tidepool Big Data Donation Project

We are Tidepool, an open source, not-for-profit effort to liberate data from diabetes devices, support researchers, and provide great, free software to the diabetes community. Our mission is to make diabetes data more accessible, actionable and meaningful. Most importantly, we are people living with diabetes and caring for others with diabetes. We’re in this together.

You are a person looking to liberate your diabetes data and contribute to the promise and potential of ambitious diabetes research. You are in control of who has access to your data, and you decide whether or not you’d like to donate your anonymized data to participate in the Tidepool Big Data Donation Project.

A response to diabetes researchers, device makers, and other innovators who have told us that using real-world datasets will help them innovate faster, create better products, and expand the boundaries of their knowledge about diabetes.

This is a program that lets you securely and anonymously donate de-identified diabetes device data to researchers, device makers, and other innovators who deeply need it. By donating your data, you will lead researchers to new discoveries about diabetes, help device makers bring safer, more innovative products to market, and enable Tidepool and other diabetes nonprofits to become stronger, more impactful organizations.

Your Diabetes Data, Data Security, and Your Privacy

Your data includes your gender, age and birth date, weight, height, treatment and diagnosis information, health and well-being related information (including diet and activity information), information identifying the diabetes monitoring and treatment devices you use, and data you upload from your diabetes monitoring and treatment devices using Tidepool Uploader, other Tidepool Apps or through third-party applications that connect to the Tidepool Platform.

We cover all of this, and more in our Privacy Policy.

Within Tidepool’s servers, we store data in our secure, HIPAA-compliant servers that are hosted by Amazon Web Services (AWS). Within AWS, we use MongoDB a popular, modern database. Within that database, we store information in a format called “JSON”. Here is an example data file (6MB compressed) for our demo user “Jill Jellyfish”. It follows the Tidepool data model (the way we internally represent data) here.

Before any data is made available to researchers or device innovators, it is stripped of all identifying information, including name, email address, and device identifiers. Most researcher want to receive information in CSV or Excel format. The above JSON file, after being stripped of all identifying information and turned into Excel format looks like this.

You will not be directly identifiable based on the information you choose to donate. Donated, anonymized information will be stored separately and made available without any of your personal Tidepool account information.

We de-identify and anonymize data in these ways…

  • For each PwD User:
    • Included: birth month and year, month and year of date of diagnosis, gender, and weight.
    • Not included: name, address, email address, birth day, notes, profile picture, 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 readings
  • For continuous glucose meters (“CGM”):
    • Included: estimated glucose, events tracked by the CGM, including meals, insulin, calibration, exercise
  • For insulin pumps:
    • Included: all pump settings, including bolus calculator parameters, basal rates, basal rate profiles, 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, and BG inputs. Note that 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.

See our Privacy Policy for more information.

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

For the Tidepool Big Data Donation Project, Tidepool strips all identifying information from anonymized data sets as described above. In addition, Tidepool replaces your Tidepool user identifier (that looks 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.

It has never happened, and we take great safeguards to prevent it, but if a data breach were to occur we would follow HIPAA guidelines for notifying our user base about the details of the breach.

How to Participate in the Tidepool Big Data Donation Project

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 setup.

Yes. 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 middle 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. 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.

Once you choose to donate your data, Tidepool will anonymize it and include it in the pool of dataset that we make available to our data partners. Different data partners have different needs, e.g. some want pump+CGM data, some may want datasets without long gaps, some may be studying the effect of different bolus types.

At this time, Tidepool does not provide a mechanism for fine-grained control over who receives the datasets. But we will always be transparent about who the recipients are.

No, once you opt-in, you’re in. Every time you upload your data, that expands the quality of data we can offer to interested third parties. The more you upload, the better quality data can provide through the Tidepool Big Data Donation Project.

More importantly, the more data you upload, the more information you and your clinician will have to make meaningful insights into your diabetes management.

The fees charged to data partners for access to your donated, anonymized datasets will help keep our software free for people with diabetes and their clinicians, as it is today. These fees are not at the expense of your data’s integrity or security, or your personal safety. In other cases, we will make datasets available at no cost. 10% of the proceeds generated from the Tidepool Big Data Donation Project will be donated to other diabetes nonprofit organizations.

Tidepool will offer access to donated, anonymized datasets to diabetes researchers, including innovators at device pharmaceutical companies. These datasets will help them accelerate their research.

We will always be completely transparent with you about what we do with the data you donate. We will keep this page up to date with the details of who we are working with at all times, how they are using the data, and what they have learned through their research.

Data helps change how the industry and insurance companies view diabetes management. We’ve seen this with Medicare’s reimbursement of CGM and in government efforts to reduce access to test strips. While we can’t predict the types of studies that will emerge from your data contributions, we can say that larger, more robust datasets create the potential for landmark research which can be cited years after its been published. With your help, our goal is to provide the best opportunity for ground-breaking research.

We will always be completely transparent with you about what we do with the data you donate. We will keep this page up to date with the details of who we are working with at all times, how they are using the data, and what they have learned through their research.

Currently, there are very few sources of large-scale, device-agnostic longitudinal data sets based on diabetes device data available to researchers. Tidepool has a strong partnership with organizations like T1D Exchange and will continue to explore ways that the Tidepool Big Data Donation Project can enhance their, and other efforts.

We are committed to figuring out a way to support citizen scientists and independent researchers with this program. While we are working out the details, we recommend you take a look at the OpenAPS and Nightscout Data Commons project.