Susan has presented the patient perspective on panels at numerous professional conferences including ACC, TCT, TVT, SMDM, and NIH. With a keen focus on meaningful inclusion of patient stakeholders, Susan is passionate about improving patient experience and outcomes through collaborative partnerships in research, healthcare systems, and industry.
An experienced educator and research advocate, Susan is passionate about the meaningful inclusion of patient stakeholders throughout the research process, ensuring that outcomes measured include those outcomes most important to patients. With an expertise in communications, Susan is skilled at editing from the patient perspective and is an experienced contributor in the design of shared decision-making tools.
Susan has a lifetime of experience as a patient stakeholder across a variety of conditions. Diagnosed with Hodgkin lymphoma at the age of 17, she understands the experiences unique to pediatric and AYA cancer patients/survivors. As a 35-year cancer survivor, Susan understands the challenges of long-term survivorship, including late effects of treatment and the importance of long-term follow up for high risk complications. She has personally encountered severe aortic stenosis (treated via TAVR in 2014) and invasive Her2+ breast cancer in 2017. Susan is recognized as a strong professional communicator skilled in Patient Engagement, Web Content Writing, Social Media, Training and Curriculum Design.
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.
With each user that requests their health records, Susan will work with Ciitizen to donate to a nonprofit cancer 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.
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 firstname.lastname@example.org 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.