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Announcing the Tidepool Big Data Donation Project

May 23rd, 2017

 

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Tidepool feels more strongly than ever that you own your own data and you get to choose how it gets used. We will never do anything with your data without your permission. Our first goal as a nonprofit organization is to help you achieve better diabetes therapy.

We do this by helping you liberate your diabetes device data, see it in intuitive software, and share it with your diabetes providers and whomever you’d like. As always, we believe that people with diabetes should have access to our software for free. That was a decision we made early, and one that continues to differentiate Tidepool from other diabetes app providers. Tidepool is here for you and the diabetes community.

Today, we are announcing the Tidepool Big Data Donation Project, 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. Now the diabetes community will have the opportunity to make an impact in diabetes research and innovation on a scale worthy of the label “big data.” By donating your data, you will lead researchers to better insights and discoveries into diabetes management, help researchers build better algorithms for closed loop systems, help device makers bring safer, more innovative products to market, and enable Tidepool and other diabetes nonprofits to become stronger, more impactful organizations.

If you are willing to do so, we would love for you to donate the diabetes device data that you store with Tidepool to the Tidepool Big Data Donation Project.

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Accelerate Research

As we’ve grown, diabetes researchers, device makers, and other innovators 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. But despite their big ambitions, these researchers and device makers are getting slowed down and sometimes stuck due to a lack of real-world data. Their requests led us to create the Tidepool Big Data Donation Project, where our community of people living with diabetes can confidently and securely contribute their data, and innovators can access it.

In some cases, we will charge researchers and device makers to get access to pre-qualified, donated, anonymized datasets that meet their needs. 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.

Support Diabetes Nonprofits

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You can also help support a diabetes organization of your choosing on their mission. Tidepool is partnering with Beyond Type 1, CarbDM, Children with Diabetes, College Diabetes Network, Diabetes Hands Foundation, diaTribe Foundation, JDRF, Nightscout Foundation, T1D Exchange, and many other nonprofit diabetes support organizations. Anytime an industry partner uses Tidepool’s paid dataset qualification services and your donated dataset is selected, Tidepool will donate 10% of the proceeds to a nonprofit organization of your choice, giving back to the diabetes community, too.

How to Donate Your Data

Already have your Tidepool account?

  1. Sign in to your Tidepool account in Google Chrome
  2. After you have logged in, you should see a blue header with a “Donate my anonymized data” button. Click “Donate my anonymized data”
    • If you’d like to have Tidepool donate 10% of the proceeds generated by your data donation to a nonprofit diabetes organization, click “Choose a diabetes nonprofit”
    • Select which nonprofit diabetes organization(s) you’d like to receive 10% of the proceeds generated by your data donation.
    • Don’t forget to save your settings!
  3. If you don’t see the blue header, click on the account name at the top middle of the page to navigate to your profile settings
    • Check “Donate my anonymized data”.
    • Select which nonprofit diabetes organization(s) you’d like to receive 10% of the proceeds generated by your data donation.
    • Don’t forget to save your settings!
  4. If you have an iPhone-connected Dexcom, setup automatic, continuous uploading using Tidepool’s iPhone app (step-by-step guide)
  5. Upload your pump (Guides to Animas, Minimed, Omnipod, Tandem) or Dexcom receiver
  6. Set a reminder to upload your data at least every month.

New to Tidepool?

  1. Create your free account at tidepool.org/signup
  2. Follow the instructions to verify your account and Set Up Data Storage
  3. Check the option to “Donate your anonymized data”
  4. If you would like Tidepool to send 10% of the proceeds generated by your data donation to a diabetes nonprofit organization, select one from the dropdown menu. Click Share.
  5. Start Uploading Your Data
  6. If you have an iPhone-connected Dexcom, setup automatic, continuous uploading using Tidepool’s iPhone app (step-by-step guide)
  7. Install the Tidepool Uploader (step-by-step guide) and Driver onto your Mac or PC
  8. Upload your pump (Guides to Animas, Minimed, Omnipod, Tandem) or Dexcom receiver
  9. Set a reminder to upload your data at least every month.

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Your Impact

Do you know what your data, combined with data from hundreds people with diabetes, can do?

  • Enable automated insulin delivery (i.e., artificial pancreas) algorithm developers to test their algorithms against everyday life events, like exercise, food, and stress, and make them better and safer.
  • Show the need for new and novel pharmaceuticals, like better insulins and glucagons, bringing more investment into diabetes.
  • Provide researchers with population-wide insights that go beyond A1C, exposing the real highs and lows of life with diabetes!

Supporting Research

We are humbled to see diabetes researchers using the Tidepool Research Platform to take on more ambitious projects and clinical studies. We believe the Tidepool Big Data Donation Project has the potential to propel a new generation of diabetes research.

The first study we supported was a T1D Exchange study called ReplaceBG. It included 226 participants spread across 30 clinical sites that used Tidepool to gather data about the safety and efficacy of using Dexcom CGMs, which lead the way to FDA approval for using the Dexcom G5 to make dosing decisions. This is now paving the way for Medicare coverage of CGM, broadening access to CGMs for more people living with diabetes.

We’ve since expanded our research partnerships to include Dexcom, UCSF, Stanford, Vanderbilt, Dartmouth, and others. This makes us very happy and proud.

Total Transparency: How Your Data Will Be Put to Use

Your data will always be anonymized, that is, stripped of all identifying information about you and your devices. Your name and device serial numbers will be removed. Your birth date will be limited to month and year.

At any time after you have opted in, you can choose to opt out. Simply log into your Tidepool account, click “Share”, then remove the Tidepool Big Data Donation Project from the list. 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 data 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 meal types.

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

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 once it has been published.

You Own Your Data

To be redundant and repetitive, the most important message here is: You own your own health data, and you get to decide how it gets used. Data privacy is near and dear to our hearts and as many of us at Tidepool are living with diabetes, we understand the importance of maintaining ownership and authority over our health data. Now, it’s time to make your data work for others  by helping researchers and innovators do things that simply weren’t possible before. Along the way, your data will help support Tidepool and many other diabetes nonprofits. And for that, we are deeply grateful.

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If you have any additional questions, check out our FAQ. We’ve thought a lot about what this project can accomplish within the diabetes community.

If you have any questions about the Tidepool Big Data Donation Project, send us an email at bigdata@tidepool.org.

 

4 Comments

  1. Do you also plan to access to this data pool to people contributing their data to said pool? For example if I wanted to see how my sugars compare to other people my age,gender,geographic area that are using the same cgms system,pump and insulin as me.

  2. *typo correction: also plan to GIVE access to this data

    • Howard Look

      Tidepool Team |

      January 4, 2018

      Hi Fred!

      Absolutely! We think that showing people how they are doing relative to others could be a very good thing. We’d love to show it right in Tidepool for web. We don’t yet have designs for this and haven’t started work on it, but it’s definitely something we’ve considered and would very much like to do.

      Cheers,
      Howard

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