Whether it's winning an argument on a talk show or winning a battle in a war, the key is preparation. This, of course, entails hours of information-gathering. When I prepare a show, I research for hours to ensure that the information I'm providing my listeners is accurate and relevant. When doctors prepare to battle a disease, they need information, too.
That's where you come in. The Medical College of Wisconsin is part of the National Institutes of Health's "All of Us" campaign, which is aiming to create a massive database for researchers to access in fighting the war on poor health. As the campaign puts it:
We are creating a research community of one million people who will share their unique health data. This will include answering survey questions and sharing electronic health records (EHR). Some participants may also be asked to provide blood or urine samples. We’ll ask you to answer more questions from time to time. It’s up to you to decide how much information you want to share.
The health data we gather from participants will be stored in a database. Approved researchers can access this data to explore how factors like environment, lifestyle, and genes, can impact health. This may help develop new medical treatments that are unique to individuals, and enable a future of precision medicine for all of us.
Your information will be kept totally confidential, so you need not worry about unauthorized access to extremely personal details. In fact, the "All of Us" campaign takes extreme care to protect your data:
These are some of the specific steps we are taking to protect participant information:
-We require All of Us Research Program partner organizations to show that they can meet strict data security standards before they may collect, transfer, or store information from participants.
-We encrypt all participant data. We also remove obvious identifiers from data used for research. This means names, addresses, and other identifying information is separate from the health information.
-We require researchers seeking access to All of Us Research Program data to first register with the program, take our ethics training, and agree to a code of conduct for responsible data use.
-We make data available on a secure platform—the All of Us research portal—and track the activity of all researchers who use it.
-We enlist independent reviewers to check our plans and test our systems on an ongoing basis to make sure we have effective security controls in place, responsive to emerging threats.
With your information protected, you can have full confidence that you will be safe as you keep others safe by providing doctors and researchers with the tools they need to fight disease and keep all of us healthy.
To learn more about the All of Us campaign and sign up, click here.