What is Citizen?
Citizen is a platform that enables patients with rare conditions to get access to all their medical data in one place and accelerate critical research efforts with minimal effort. In partnership with over 80 advocacy partners and 12,000 patients, we’re supporting rare disease patients using their own health data to improve care and accelerate groundbreaking treatments.
How Does it Work?
After a brief sign up process, Citizen will do all the work to collect your medical data from all your providers and points of care and provide you access to your data in your secure, digital profile.
With your data finally all in one place, you’re in control of what happens next. Share your citizen profile with your care team to help inform your healthcare decisions, or choose to share your de-identified data stripped of any personal identifiers to help power research.
How will Citizen benefit our community?
The data in our collective medical histories is critical to understanding the disease and to help researchers design more effective clinical trials. We can get researchers the data they need faster and more easily than ever with Citizen - no site visits required! We’re digitally powering critical research with Citizen and getting patients and families access to their own medical histories to help inform their care and next steps.
How do I know security is top priority?
Citizen is committed to protecting your privacy. The data governance followed by Citizen ensures secure storage of patient medical records. To learn more about the security measures Citizen takes, please visit https://www.citizen.health/privacy
What are the consents I am asked to sign?
Privacy and security is the top priority for Citizen. In order to consent to share information, there are two consent agreements for you to consider. The first consent is to share your contact information with your advocacy organization so you can engage with your community. The second consent is to share de-identified data for research purposes.
How long does it take to sign-up?
Sign-up can take as little as 5 minutes.
What do I need to have on hand to sign-up?
You’ll need your driver’s license or government ID to confirm your identity. If your loved one is over 18 years of age, you’ll need their guardian paperwork, medical power of attorney, or other legal document. If your loved one has passed away, you’ll need the death certificate. Reference this site to order a lost or misplaced government document. https://www.usa.gov/replace-vital-document
How do I enter the doctors and hospitals where my child has received care?
Use the search menu to find the provider names or the hospitals. If multiple doctors have been seen at one location, it’s best to search for the facility/group name. Citizen will collect records from all providers within a health system if the Health Information Department is centralized. If you are unable to find your provider by healthcare facility or provider name, please reach out to the Citizen support team for assistance. See below for ways to connect with the Citizen Support Team.
When we go back to the doctor or have a hospital visit, how do I update my medical records on Citizen?
Patients can login at any time to request new records. We recommend patients request updated medical records once a year by signing into Citizen and clicking one button.
Can I upload records to the Citizen Health platform?
Yes, to upload records that you have in your possession click on the “My health” tab at the top right of the screen on Desktop, or the bottom right on your mobile device. Click the “Upload Documents” button in the top right corner. The formats that you are able to upload are png, pdf, jpeg up to 700MB and dcm files up to 800MB.
Does Citizen collect other information besides medical records? For example, parents may want developmental assessments, IEPs from their child’s school, dentist, and therapists.
Citizen uses the HIPAA Privacy Rule right of access to collect medical records from physicians, hospitals, and other medical facilities. This law does not extend to non-clinical locations. You can however, upload copies of records you have in your files for safekeeping on your Citizen dashboard.
What happens after onboarding to Citizen?
Your records will be uploaded to your portal under “My Health” in the next 30-60 days. We may reach out to you from support@citizen.health if we need further details to collect your records. Your providers may also reach out to confirm you would like to move forward with the records request.
Citizen engages with academic researchers and Industry partners with an approved IRB protocol to conduct research on the de-identified datasets. If any of your data is used in research conducted by pharmaceutical companies developing treatments for our disease, you will share in licensing fees and receive a monetary gift card. In this way, your data also becomes your currency.