Ciitizen Ambassador

Ivy Elkins

  • WIFE
  • MOTHER
  • DAUGHTER
  • ADVOCATE
  • SURVIVOR

"I am working with Ciitizen to help members of the EGFR Resisters gain access to their comprehensive health records. With each person who requests their health records, $10 will be donated to LUNGevity Foundation for a collaborative research project with the EGFR Resisters aimed at improving outcomes for EGFR positive lung cancer."

Ivy lives in the Chicago suburbs and was diagnosed with stage IV lung cancer at the end of 2013. She is actively involved in patient and research advocacy for lung cancer with a special focus on her subset of lung cancer, which is EGFR positive. She co-founded the EGFR Resisters Patient group in mid-2017.

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.

Already have a Ciitizen profile? Log in.

With each user that requests their health records, Ivy will work with Ciitizen to donate to the following organization:

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.

Learn more about how Ciitizen works

Patient Stories

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"Getting my records was so difficult, it was easier to repeat the tests for every new provider I saw."

Tamira

Diagnosed with breast cancer, May 16, 2016

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"I am a cancer warrior, and data is one of my most powerful weapons."

Yvette

Diagnosed with Ovarian Cancer, September 2, 2016

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"I need to get my records in a timely fashion so I can go about planning my treatment path"

Susan

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 education@ciitizen.com to learn more.

How It Works

1

Create your account

Click the “Join Ciitizen” button above, then enter your email, name, and password.

2

Request your health records

Search from a list of places you have received care, and add a picture of your photo ID.

3

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.