Imagine that all your blood glucose results and other data tracked by your insulin pump, continuous glucose monitor and other gadgets could serve the greater good and help accelerate research -- at no cost to you -- and you'd even get a chance to support some leading diabetes charity orgs.
The big news from non-profit open data group Tidepool this week is the launch of just such an opportunity: their so-called Big Data Donation Project aimed at making the best possible use of the reams of valuable diabetes data that's currently only serving each of us individually. If we as a community are willing to pool our data, just imagine the learnings that researchers could find!
All we're asked to do is grant access to our data by uploading it to a cloud-based platform, where it will be anonymized and made available to key research projects and possibly for advocacy and quality of life initiatives that will benefit us all.
In some cases, the data will be sold, and the cool thing is that Tidepool will share 10% of the proceeds with a variety of non-profit diabetes charities that include JDRF, Beyond Type 1, Children With Diabetes, the Nightscout Foundation, and more (see below).
"Diabetes researchers and innovators find it really difficult to get access to high-quality data sets. By allowing users to opt in to sharing their data, we hope to catalyze even more innovation and expand the boundaries of knowledge in a way that will rapidly help the diabetes community," says Tidepool founder Howard Look, who has a daughter with type 1.
He adds: "This is something we've been thinking about since the beginning. We feel really strongly that people with diabetes own their own data, (and) we want to make it much easier for people who want to donate their data to help researchers and innovators."
Here are some details we queried directly from Tidepool, to better understand this exciting news:
DM) Give us a quick "elevator pitch" on what this Big Data Donation Project is all about?
TP) As we’ve grown at Tidepool, 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 this 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.
What are the research possibilities here?
- 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 glucagon, 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!
Should we be concerned about our data being sold? And privacy issues?
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. As noted, 10% of the proceeds generated will be donated to other diabetes nonprofit organizations.
Can you describe how Tidepool will "anonymize" the data?
Your data will always be... 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. 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 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.
Who do you expect will get what data?
Different data partners have different needs -- 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.
Who are Tidepool's first research partners on this?
The first is Dexcom, which will receive anonymized data through this program. We expect many others down the road.
Who are the diabetes nonprofits you've partnered with to receive donations?
The first organizations are: Beyond Type 1, CarbDM, Children With Diabetes, College Diabetes Network, Diabetes Hands Foundation, diaTribe Foundation, JDRF, the Nightscout Foundation, and the T1D Exchange.
What about the American Diabetes Association (ADA), which is notably missing from that list?
Tidepool hopes to work more closely with the ADA in the future.
Has this type of patient data donation to research been done before?
Yes, this isn't 100% unique -- one of those well-known data donation repositories is known as Open Humans, from the Robert Wood Johnson Foundation, which allows people with a variety of different health conditions to donate their personal data for research and citizen science.
And have there been projects leading up to this in the diabetes world?
Yes, and Tidepool's been a part of those research efforts in substantive ways to date:
- ReplaceBG: The first clinical research Tidepool supported was a T1D Exchange study known as Replace BG, which included 226 participants from across 30 clinical sites in the US. They used Tidepool's platform to gather data about the safety and efficacy of using Dexcom CGMs for dosing decisions, which was a critical component of helping influence the FDA in granting a non-adjunctive designation in 2016 -- meaning CGM data can be used for insulin dosing decisions -- and eventually starting the process for Medicare coverage of the G5 (that's a work in progress, btw).
- Dexcom's DIaMonD study used Tidepool to collect pump data for this first-of-its-kind study looking at CGM use for those on Multiple Daily Injections (MDI).
- T1D Exchange/MyGlu is using Tidepool to collect data for their Glycemia study.
- Dartmouth and Vanderbilt universities, as well as UCSF, have used or are also using the Tidepool Research platform for their specific clinical purposes.
You can find out more about these particular projects at tidepool.org/research.
How long will Tidepool's Big Data Donation project last?
Hopefully forever! We are just getting started.
The most up-to-date Tidepool info on this Data Donation Project can be found online here.
Got additional questions? Like how does this relate to other diabetes data registries in the works, like that from T1D ExChange? Tidepool's got more answers in their comprehensive FAQ here.