- Woman LIVING with metastatic breast cancer
"I love having my records in one place, summarized, and knowing that I can easily share them with my care team or if I go for another opinion or a clinical trial."
In 2008, Kelly Shanahan had everything going for her: a graduate of Bryn Mawr College and the University of Virginia School of Medicine, she had a busy and successful ob-gyn practice in South Lake Tahoe, CA; a precocious 9 year old daughter; and a well used passport from traveling all over the world with her family to attend conferences, with a liberal dose of vacation on the side. When she was diagnosed with stage IIB breast cancer in April, she considered it a mere bump in the road; after all, she returned to work two weeks after her bilateral mastectomy and continued to work all through the four months of chemo.
And for five years, breast cancer was an aside, something to put in the past medical history section of forms. Even when she developed sudden back pain, Kelly never thought it could be breast cancer rearing its ugly head – a pulled muscle, a herniated disc maybe, but not what it turned out to be: metastatic breast cancer in virtually every bone in her body, with a fractured vertebrae and an about to break left femur. Kelly was diagnosed on her 53rd birthday.
Kelly has been extremely lucky, for after an unconventional 14 month course of combination IV chemo and zometa, followed by a more conventional aromatase inhibitor, she has remained NEAD – No Evidence of Active Disease -- since April 2014. Neuropathy from the chemo did cost her her career, but she has found a new purpose in advocacy. Kelly is a volunteer and grant reviewer for METAvivor; a member of the Metastatic Breast Cancer Alliance; an advisor to Metastatic Breast Cancer Canada; a member of the Komen Advocate Advisory Taskforce; and a consumer reviewer for the Department of Defense Breast Cancer Research Program. She says she will fight for more research funding for the already metastasized patient until her dying breath. Her current goals are to get five more stamps in her passport; celebrate her 25th wedding anniversary in January 2020 at The French Laundry; and to see her daughter graduate from college in May 2020. If she makes those goals, she’ll come up with another three!
Kelly Shanahan is a mother, a wife, a daughter, a doctor, a woman LIVING with metastatic breast cancer.
Ciitizen is a platform that helps you collect, summarize, and share your medical records digitally. It can be used to get a second opinion, coordinate with caregivers, or donate to research.
Starting with cancer, we are giving patients better control of their health outcomes.
We are here for you.
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 fragmented – and she didn’t have control over it. Ciitizen was founded to change that reality for others.
If you choose to join, Ciitizen will gather health data from the health care providers that you indicate and they will organize that data in a way that you can easily share with other doctors, clinical trial coordinators or even donate to research.
Diagnosed with breast cancer, May 16, 2016
Diagnosed with Ovarian Cancer, September 2, 2016
Metastatic breast cancer since March 2014
Become a Health Data Ambassador
Your voice is important in the effort to help educate individuals about the value of health data and their individual health data rights. If you believe individuals with a diagnosis or history of cancer should have control over their own health data to use for their care coordination, accessing second opinions or sharing with research, we would love to talk to you.
Please contact email@example.com to learn more.
How It Works
Create your account
Click the “Join Ciitizen” button above, then enter your email, name, and password.
Request your health records
Search from a list of places you have received care, and 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.
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.