Cholangiocarcinoma Foundation and Ciitizen Partnership
The Cholangiocarcinoma Foundation (CCF) is excited to partner with Ciitizen to give cholangiocarcinoma patients a way to collect and organize their complete health history, free of charge.
Fundamentally, we believe that your data belongs to you, and you should always have complete control of it.
When you control your data, you can more easily:
- Coordinate your care
- Share with loved ones and your care team
- Choose to contribute your clinical and genetic/genomic data to the CCF registry
- Have a complete and up-to-date medical record controlled by you at all times
How does this help me and the CCF community?
By signing up for a Ciitizen profile, you will be able to easily collect and organize your medical records from anywhere you have received care in a single, secure place. This is your right.
Having your comprehensive medical record in one place makes it easier to coordinate your care, and identify studies and trials for which you may be eligible. By contributing your data to the CCF registry, you will provide us with the clinically validated data that researchers need to more effectively develop therapies and options for our community.
There is no cost to CCF patients to participate.
Who is Ciitizen?
Ciitizen was founded by Anil Sethi in honor of his sister Tania, who died of metastatic breast cancer in 2017. Tania received care across 17 institutions and saw 23 oncologists, and while she was able to get some of the best care, her caretakers were always acting on limited information because her health history was so fragmented – and she didn’t have control over it.
When Tania left us in 2017, we made a promise to her. That we would create Ciitizen where our mission is clear: to provide patients with complete control over their comprehensive health information, which they could share with whomever they want (or not).
When you sign up, we will help you aggregate and collect all your medical records in a single place, and allow you to easily share your data with whomever you want.
And your privacy and the security of your data is our top priority. We never share it with any third parties without your explicit consent. Your health data belongs to you.
When you control your data, you can more easily:
How does it work?
Create your account
Click the blue “Sign Up” button above, then enter your email, name, and password.
Request your Health Records
Search from a list of places you have received care, then add a picture of your photo ID.
We get your records for you
Over the next 2-4 weeks, we will get your health records and add them to your Ciitizen account. We will notify you when we’ve received your records.
Choose to share your records
You will have the choice to share your Ciitizen profile with whomever you want.
"Thanks for giving me a place that is secure and gives me access to my medical files 24/7 without a hassle."
"When I meet with a new patient, having their complete medical record is invaluable. It lets me get up to speed quickly and determine appropriate treatment right away... making it easy for them is a huge step forward and something every oncology patient should have."
"In a perfect world, there would be one repository so that I, the patient who owns my medical data, could determine who can access my data, whether a second doctor, an institution, or a study that will help myself and other cancer patients."
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 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 is valuable – and we let you control what happens to it. When there are opportunities for you to monetize your data, Ciitizen will take a transaction fee.