Director of Clinical Informatics
Deven McGraw, JD
Premal Shah, PhD
Jim Zeng, JD
Latest news and articles.
Frequently Asked Questions
Q: Who is eligible for the beta?
A: Currently we are focused on cancer specifically. Over time we will add additional diseases before eventually scaling to improve healthcare for every person worldwide.
Q: Why is it so important to have your health information?
A: Around the world, a mountain of valuable health information needed to treat patients and accelerate research is trapped in silos because our medical institutions have no incentive to share it. Currently, there are misaligned incentives driving institutional stakeholders to hoard patient data for “competitive advantage,” falsely citing HIPAA and other regulatory requirements as justification for their roadblocks. Ciitizen aims to change that.
Patients have the right under HIPAA to copies of all of their health data and they can share it with whomever they choose, whenever they want. In the hands of those who need it most, personal health information will not only improve care coordination but also has the potential to lead researchers to groundbreaking treatments.
Q: Why was Ciitizen formed?
A: Ciitizen was founded by Anil Sethi in honor of his sister Tania, who was killed by metastatic breast cancer in 2017. Our mission is to provide patients with control of their comprehensive health information (including clinical, genomic, and imaging data) and give them the choice of sharing it with whomever they choose.
Q: I signed up on the ciitizen.com website, where’s my invite?
A: We are inviting beta users in waves, so there may be a short delay. We greatly appreciate your patience.
Q: I created an account already, but where do I log in?
A: Click “Log In” on the ciitizen.com website and log in with your username and password, or go to app.ciitizen.com and log in directly.
Q: What type of technology do I need to use Ciitizen?
A: All you need is a computer, an internet connection, and an internet browser such as Firefox, Google Chrome, or Safari.
Q: What do you do with my health data?
A: Your health data belongs to you. We do not share it with any third parties without your explicit consent. We use your data internally to create your account and to improve our product for your best use. We will always ensure nobody has or gets access to your data without your explicit consent.
Q: Is it safe to keep my information on your platform?
A: Ciitizen uses HIPAA compliant Amazon Web Services (AWS) to maintain your data. AWS is an encrypted platform in widespread use by companies worldwide, and their product reputation depends on keeping data secure. Additionally, we have stringent policies for staff regarding access to data aimed at ensuring your data is protected at all times.
Q: How much does it cost to join Ciitizen?
A: Ciitizen currently does not charge users for use of the platform.
Q: How do you make money?
A: Your data, whether identifiable or de-identified, is valuable – and we let you control what happens to it. When there are opportunities for you to monetize the cancer data in your profile, Ciitizen will take a broker’s fee for putting you and your data together with the entities interested in purchasing it.