A letter from our Chief Regulatory Officer, Deven McGraw
My name is Deven McGraw, and I’m the former Deputy Director for Health Information Privacy at the Office for Civil Rights of the U.S. Department of Health and Human Services. In my role, I was responsible for enforcing HIPAA and issuing guidance on how to comply with its rules.
I spent two years with the U.S. government working on behalf of patient rights regarding personal health data, and now I’m the Chief Regulatory Officer at Ciitizen to further that mission. I’m here to make sure you know your rights regarding your health information:
It’s yours. You have the right to all of it.
When I first interviewed for the position at HHS, I brought up the patient’s right of access under HIPAA and how it would be a goal of mine to issue additional guidance to those entities required to comply with the law. HIPAA (or the Health Insurance Portability and Accountability Act of 1996) is the piece of U.S. legislation that provides data privacy and security provisions for safeguarding our medical information. It was important to me that hospitals, health professionals, and insurers better understand their obligation to patients under this act. I also wanted patients to be more aware of their rights under HIPAA so that they could exercise them. Within my first year on the job, we issued comprehensive guidance on the patient’s right of access and we worked with the Office of the National Coordinator for Health IT to develop consumer friendly materials, including brochures and videos that you can view online today. Within my first year here at Ciitizen, I’ve made a similar goal.
If you’ve requested a copy of your health record and found getting a copy to be difficult, I have some good news for you regarding your rights. You have plenty of them:
- You have the right to all the health information generated as part of a visit to the doctor or a stay in the hospital. You have the right to a copies of your lab tests. You have the right to the results and underlying data from your genome sequence. You have a right to your x-rays, CT scans, and MRIs, too.
- Not only do you have the right to all your data, you have the right to it within 30 days of the request (in most circumstances), in the format you want it (so long as the entity can produce it). If you want that information digitally, you have the right to have it digitally.
You have the right to a copy of all your health information for no more than the reasonable cost of making that copy. You have the right to have that information emailed to you if that’s most convenient. The institution at hand may have some security concerns, but if they provide you with a light warning of that risk and you agree to it, it’s your right to have it emailed. If you do have concerns about using your insecure email, then you have the right to get that information in a secure way. Most importantly, you have the right to get all of it. Every bit of medical information that is generated about you is your right. It’s also your right to request a correction to it. Information that is incomplete may also be wrong, so you have the right to request additional information be added if you think there’s something missing. You have the right to have any institution send your health data to any third party that you want. If you want that info sent to Ciitizen, that is your right. If you want it sent to your spouse, that’s your right. You have the right to decide.
All of these rights have been in existence since the early 2000s, so most of them are almost twenty years old at this point. However, most people don’t fully realize it. Many institutions and medical practices have not paid attention to the HIPAA right of access and therefore have not established practices allowing for people to easily exercise it.
That being said, I know what your rights are. I’m now here on behalf of our users (ciitizens) to make sure you have full access to your complete health information.
Deven McGraw, JD, MPH, LLM
Ciitizen Corporation (“Ciitizen”) enables individuals to collect, maintain and share all of their health information as they see fit and under their control. We’re empowering the world’s citizens to conquer disease – by making it possible for them to gather, use and share their health information to improve their lives and ultimately the lives of others like them.
Ciitizen understands that health information is powerful, valuable and sensitive, so securing and maintaining the trust of our users is mission critical to our success. We are committed to maintaining strong and meaningful privacy protections as a bedrock principle of our company. Complying with applicable law is just our starting point; our commitment to serving you includes regularly thinking about how we can improve how well we are both protecting information about you – and also sharing it according to your wishes.
If you have any questions or concerns about this Policy, please contact us at email@example.com.
Personal information we collect
Personal information” is data that can be used to identify you or contact you.
Personal Information for Basic Ciitizen Account Creation & Maintenance (“Basic Account Information”)
We collect some personal information from you for account creation and maintenance. Such information includes your name, address, e-mail address, and telephone number, and may also include contact preferences, device identifiers and IP address.
(As explained later in this policy, for a small subset of beta users Ciitizen is currently collecting records from medical providers and health plans for population in these users’ Ciitizen accounts. Before we can collect this information on a user’s behalf, we will need to confirm the user’s identity, and we work with third party identity service providers in order to do so. If you are invited to and opt to participate as a beta user, Ciitizen will also collect additional personal information about you which will be used to verify your identity, including a driver’s license number or image, cell phone identifier or a social security number. Beta users will also be asked to provide additional personal information, such as prior names, addresses, phone numbers or e-mail addresses; birth date; gender; race or ethnicity; medical or health plan record numbers; and information about medical providers such users have seen for care and the users’ health plans. This information will help us locate beta users’ health records and help the providers and health plans accurately match and send the right information for population in a beta user’s Ciitizen account.)
If you decide you want to enable friends or family members to have access to your Ciitizen account, we will collect personal information about those individuals (name and e-mail address) in order to fulfill your request.
From time to time, Ciitizen will send you emails that communicate information about your account or about products, services, or offers that may be of interest to you. When you open one of these e-mails or click on links within the e-mail, we may collect and retain information to provide you with future communications that may be more interesting to you. You will have the option of opting out of all e-mail communications except those that Ciitizen reasonably deems are required by law or necessary to prevent or mitigate a security or fraud risk, or to continue to provide you with Ciitizen services.
We will let you know at the time of collection when it is optional for you to provide information and when it is necessary to do so in order to use certain Ciitizen services.
Personal Information to Populate Your Ciitizen Account (“Ciitizen Record Information”)
Ciitizen’s mission is to enable individuals to collect all of their health information in one place and use it and share it as they please. You will have the option to upload health care documents, as well as, in the near future, to directly input information about your health, such as information about how you’re feeling or pain management and the option to opt in to sharing information from personal devices or mobile health apps.
We will ask your permission to collect this information – and, as explained below, we will not share this Ciitizen Record Information without your permission, except under circumstances identified below.
(As discussed briefly above, if you are invited to and opt into being a beta user and have Ciitizen obtain your medical records, we will reach out to your health plan(s) and medical providers to obtain copies of your health information for population in your Ciitizen account.)
Disclosure to Third Parties
As noted above, the mission of Ciitizen is to enable individuals to collect their health information, so they can control it – and use it and share it as they wish.
In general, it is Ciitizen policy that we do not use or share your personal information except with your consent; however, there are circumstances where some of your personal information will need to be shared without an opportunity to first obtain your consent. For example, Ciitizen may share your personal information – both Basic Account Information and Ciitizen Record Information -
- to comply with valid legal process including subpoenas, court orders or search warrants, and as otherwise authorized by law;
- to outside auditors and regulators; and
- to protect against fraudulent, malicious, abusive, unauthorized or unlawful use of or subscription to our products and services and to protect our services and users from such use.
In addition, we may need to disclose personal information to third party contractors who need that information in order to perform services or functions that enable Ciitizen to function as a company. In those cases, third party contractors will be bound by contract limiting their use or disclosure of the information and obligating them to protect it. In addition, we will endeavor to share only the minimal amount of information necessary to accomplish the intended purpose.
(if you are invited to and opt into being a beta user and have Ciitizen obtain your medical records, we will share Basic Account Information (see above) to a third-party that you have authorized to verify your account information and when you have authorized others to authenticate you or verify your account information.)
Except as stated above, Ciitizen will not share your Ciitizen Record Information (e.g., the health and medical information populating your Ciitizen account) with a third party unless you have given us permission to do so.
We also will not ever sell your personal information to a third party, except with your consent.
If Ciitizen enters into a merger, acquisition or sale of all or a portion of its assets or business, user information will also be transferred as part of or in connection with the transaction. Where possible, Ciitizen will notify you in advance of such a transaction and you will be offered an opportunity to opt-out of having your information transferred.
In any circumstance where your consent is sought prior to Ciitizen sharing your personal information, you will be able to withdraw that consent at any time. Such withdrawal of consent will apply only to uses or disclosures of your personal information within 48 hours after Ciitizen has received the withdrawal.
Ciitizen Use of Your Personal Information
As a company, Ciitizen may use your personal information to create and manage your Ciitizen account, as also for the following purposes:
- To keep you posted on Ciitizen product announcements, software updates, and upcoming events. You can opt out of these communications at any time.
- To help us create, develop, operate, deliver and improve our products and services, and, when necessary, for loss prevention and anti-fraud purposes and account and network security purposes.
- To send important notices regarding Ciitizen products, including changes to our terms, conditions, and policies. You may not opt out of receiving this information as long as you continue to have a Ciitizen account.
Ciitizen does not make decisions based solely on automated processing, including profiling, which have legal consequences for, or significantly affect, our users.
Ciitizen may access information about your use of our website or services in order to prepare, for both internal use and in some cases public dissemination, aggregate statistics about use of Ciitizen. Such statistics will not contain any personally identifying information about any Ciitizen users.
Use of Ciitizen Website
Do Not Track. Ciitizen does not track its users over time and across third party websites to provide targeted advertising and therefore does not respond to Do Not Track (DNT) signals.
Keeping children safe
Ciitizen recognizes that online service providers must be vigilant in protecting the safety and privacy of children online. We do not knowingly market to or solicit personal information from children under the age of 13 without first obtaining clear parental consent.
Although we work hard to protect personal information that we collect and store, no program is 100% secure and we cannot guarantee that our safeguards will prevent every unauthorized attempt to access, use or disclose personal information. Ciitizen maintains security and incident response plans to handle incidents involving unauthorized access to private information we collect or store.
Blogs and social networking and educational or promotional content
Ciitizen regularly publishes blog posts and invites any individual to sign up to receive these posts via e-mail. E-mail addresses are collected from these individuals and used by Ciitizen or a contracted service provider solely to send these blog posts and other Ciitizen marketing or promotional material. Note that individuals who create an account on our service will receive e-mails that contain newsletters, links to blog posts and other marketing or promotional content. Any individual – whether or not a Ciitizen account holder - may opt out of receiving any communications from us by following the unsubscribe link in the communications.
The Ciitizen website may from time to time allow you to participate in blog discussions, message boards, chat rooms, and other forms of social networking and to post reviews. These forums are accessible to others and information you post can be read, collected, shared, or otherwise used by anyone who accesses the forum. If you post content to information sharing forums, including any information about the movies you rent or view, you are doing so by choice and you are providing consent to the disclosure of this information.
The information in your Ciitizen account belongs to you; you can remove it anytime you want, except to the extent prohibited by law. Except to the extent that retention of certain information is required by law, when you ask us to delete your account, your information will be permanently expunged from our servers and securely deleted and further access to your account will not be possible.
You have the right to access and receive copies of your personal information – and, as noted above, to consent – or not – to sharing of your Ciitizen Record information with any third party, subject to the exceptions set forth above.
Integrity and Retention of Personal Information
Ciitizen makes it easy for you to keep your Basic Account Information accurate, complete and up-to-date and will work with you to keep your Ciitizen Record Information similarly accurate, complete and up-to-date. Information in a Ciitizen user account sourced directly from a third-party such as a medical provider, health plan, or other health data source cannot be changed by an individual Ciitizen user; however, Ciitizen users have opportunities to provide additional information to dispute potential inaccuracies or provide additional context for the information.
Changes to this policy
Last updated October 3, 2018 (changed to include opportunity to sign up for promotional content and right to opt out).