DONATE YOUR DATA
Right now, a massive clinical study like the Athena Breast Health Network has 150,000 people in it. That is a number that is significantly larger than a traditional clinical study – which might have a few thousand people in it – but it wouldn’t move the needle at Facebook or Google.
Our goal is to get a large number of people to donate their data to research. When we have accomplished that goal, researchers will be able to use the same kinds of strong mathematics that drive social, mobile, and financial technologies built on data for health research.
Sound good? Keep reading. Or if you’re ready, click the button below to get started.DONATE YOUR DATA
MAKE AN IMPATIENT CHOICE
This is a serious choice you are making. Make sure you’re serious about it.
First, get your data.
If you want to donate data, the first thing you have to do is go get your data! Right now, most people don’t have “computable” data about themselves. If you have had your genotype sequenced at 23andme or another direct-to-consumer genomics company, that’s a great place to start. Or, if you’ve gotten your medical records in electronic format, that’s another great place to start.
The second thing you have to do is choose your study. You can either enroll in one of the “focused” studies running at Sage Bionetworks’ Bridge portal – Parkinsons, Diabetes, Fanconi Anemia are each beginning active recruitment soon.
If you want to sign up for a very expansive study, please carefully read through the FAQ for the “generic” Self-Contributed Data study and, if you’re interested, sign up for our mailing list and we’ll help you enroll.
Make sure to get your data ready – onto your hard drive and named in a way that doesn’t identify you unless that’s what you want – before you start.
However, if you don’t already have your genotype sequenced, or an electronic version of your medical records, it’s harder to use your data in these kinds of studies. We can still accept your data, but it’s not as likely to be used in computational research. You can either commission the creation of this kind of data, or you can join in the growing movement for democratization of data by asking for it from your medical providers.
NOT ALL DATA IS CREATED EQUAL
Not all data is created equal. The kinds of computational research that PLC is designed to unleash depend on not just streams of data, but “computable” data.
Computable means different things to different researchers, but for our purposes, at least the following kinds of data qualify.
- Genomic information. Whether you’ve had your genotype sequenced (the bits of your genome that make you different) or your exome or your whole genome sequenced, we can accept that information. It’s usually a text file full of As, Cs, Ts, and Gs, and it’s quite easy for us to process and send on to researchers for computation. If you’ve bought a genotype from 23andme, you can download it by logging in, clicking on the “account” link on the top right of the page, and selecting “Browse Raw Data.”
- Electronic medical records. These are digital versions of the paper based records that physicians have used for a long time. However, simply being digital isn’t good enough. We can best use records that are “structured” – which means they’re in a format that a computer can understand without a lot of help. Unfortunately most of the time our physicians send us PDF files, which are great for people, but terrible for computation. There is a lot of other data available, especially information coming off our phones, new mobile devices, quantified self technology, and even good old surveys.
- We will be adding support for these data types – and many more – as we add more functionality to the system. But for now, we are looking hardest for people who have got both a genomic data file and an electronic medical record data file. This allows us to perform the most collection, syndication, and enable the most computation, without having to secure funding for a massive staff. If you’d like to get some help in getting computable data about yourself, ask us and we’ll get back to you.