Table of Contents
- Our Website/Portal
- Personal data which we collect about you
- How is your personal data collected?
- How we use your personal data
- Explaining the legal bases we rely on to process personal data
- Advertising, marketing and your communications preferences
- Disclosures of your personal data
- Data security / HIPAA Compliance
- Third-party links
- Data retention
- Your legal rights
- International transfers
- How to contact TCC about privacy
It also tells you about your privacy rights and how the law protects you.
2. Our Website/Portal
Our website provides information and resources about thyroid care and serves as a HIPAA-compliant online medical record for thyroid-related personal health information. This website is also used for children over 6 years of age with their verbal consent and the written consent of their parent or legal guardian.
The TCC is the data controller responsible for this website and any handling of personal data carried out by or on behalf of the Thyroid Care Collaborative.
3. Personal data which we collect about you
We collect personal data, identity data, contact data, financial data, transaction data, profile data, technical data, usage data, tracking data, and marketing & communications data.
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Personal data, or personal information, means any information about an individual from which that person can be identified. It does not include data where the identity has been removed (anonymous data).
We collect detailed health information about our registrants provided primarily by their doctors and members of their care team.
Identity Data includes title, first name, last name, username or similar identifier and an encrypted version of your login/password. It also includes address, dates (including birthdate and dates of medical service), telephone number, fax number, email address, social security number, medical record numbers, health plan beneficiary number, account number, certificate or license number, vehicle or device serial number, web URL, IP address, finger or voice prints, photo, and any other unique individual identifier.
Contact Data includes mailing address, email address and telephone numbers.
Financial Data or insurance information is not included in the TCC.
Transaction Data relates to record entries by physicians or patient users.
Profile Data includes any profile you have created by registering on our site, your username and password, preferences, feedback and survey responses, as well as any profile data which we have added (for example, using analytics and profiling).
Technical Data includes internet protocol (IP) address, your login data, browser type and version, time zone setting and location, browser plug-in types and versions, operating system and platform and other technology on the devices you use to access this website.
Usage Data includes information about how you use our website, products and services.
Tracking Data includes information we or others collect about you from cookies and similar tracking technologies, such as Hotjar or mobile identifiers.
Marketing and Communications Data includes your preferences in receiving communications from us.
4. How is your personal data collected?
We use different methods to collect data from and about you including direct interactions and automated technologies or interactions.
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Direct interactions. You may give us your Identity or Contact Data by filling in forms or by corresponding with us by post, phone, email or through online registration.
This includes personal data you provide when you:
- sign up as a TCC user;
- make enquiries or request information to be sent to you;
- create an account on our website;
- engage with us on social media; or
- contact our office for any reason
Automated technologies or interactions. As you interact with us, on our website or via social media, we may automatically collect Technical Data about your equipment, browsing actions and patterns. We may also collect Tracking Data when you use our website or resources.
5. How we use your personal data
We will only use your personal data when the law allows us to.
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We will only use your personal data when the law allows us to. Most commonly, we will use your personal data in the following circumstances:
- Where you have consented for us to collect data for research.
- Where it is necessary to provide you with the [services] you have requested or to enter into a contract.
- Where it is necessary for our contract performance (for example to allow your doctors to care for you) and your interests and fundamental rights do not override those interests.
- Where we need to comply with a legal or regulatory obligation. For example, CDC, NIH.
Generally, we rely on consent as a legal basis for processing your personal data where the law requires it, for example in relation to including your PHI in this portal. Where our legal basis is consent, you have the right to withdraw consent any time. . If you do not permit us to use your personal data, we may not be able to provide you with updates on head and neck cancer research, invite you to support groups or events, or allow you to participate in our programs [etc.]
See Explaining the legal bases we rely on to process personal data to find out more about the types of lawful basis that we will rely on to process your personal data.
6. Explaining the legal bases we rely on to process personal data
The table within our ‘manage your consent‘ page shows you a description of all the ways we plan to use personal data, and which of the legal bases we rely on to do so. We have also identified what our legitimate interests are where appropriate.
Note that we may process your personal data for more than one lawful ground depending on the specific purpose for which we are using your data.
We do not carry out any automated decision making.
If you ever have any questions about this, all you have to do is ask. See how to contact TCC about privacy below.
7. Advertising, marketing and your communications preferences
We may use your Identity, Contact, Technical, Tracking, Usage and Profile Data to form a picture of what information we think you may be interested in. This is how we decide which products, services and offers may be relevant for you and tell you about them. This is what we call direct marketing.
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We may carry out direct marketing by email, phone, text or post. For example, you might have received notifications of upgrades to the TCC.
On our website, we always try hard to make it really clear what we are doing and what communications you will be sent, whether it’s you deciding to sign up to receive notifications – and you have a right at any time to change your mind and opt out. The easiest way to opt out is to contact us in writing or by email.
We have established a privacy center where you can view and make certain decisions about your personal data use www.thyroidccc.org/manage-your-consent
You may learn about TCC programs and events in different ways and not all of these are based on using personal data. There are some things we may do that may be specifically directed at you:
- emails, for example to inform you of updated information in your record
- text messages, for example with reminders of upcoming appointments
- newsletters or solicitations by mail, or
- phone calls, to tell you something that might be relevant or of interest to you
Tracking Data, and in particular cookies, help us to deliver website and social advertising that we believe is most relevant to you.
Cookies can also tell us if you have seen specific information, and how long it has been since you have seen it. This is helpful, because it means we can control the effectiveness of our information and control the number of times people might be shown specific information. Cookies also help us understand if you’ve opened an email because we don’t want to send you things you don’t read.
If you want more information about Tracking Data, in particular cookies, see Cookies below.
You can see from Advertising, marketing and your communications preferences above, that cookies are a tool which we (and everyone one else who operates online) uses for advertising. That is just part of why cookies are used.
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Cookies help the TCC to be more effective and provide help in the background to make the process of being a part of the TCC easier.
When a user is logged into the TCC, we place cookies on their computer that contain some personal information in order to make sure that we can confirm their identity on each page they visit. This is done for security purposes and they are removed when the user logs out.
9. Disclosures of your personal data
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We may share personal data with the following categories third parties:
- Service providers (such as technology service providers, payment processing and fraud prevention providers);
- auditors and professional advisers like lawyers and insurers; and
- government, regulators and law enforcement.
We do not share personal data other than as listed above, unless you have given written consent or added a member to your care team. However, when information is shared as indicated above, we require all third parties to respect the security of your personal data and to treat it in accordance with the law. We do not allow our third-party service providers to use your personal data for their own purposes and only permit them to process your personal data for specified purposes and in accordance with our instructions.
10. Data security / HIPAA Compliance
We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorized way, altered or disclosed. TCC data is housed off-site on HIPAA-compliant servers. In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know. They will only process your personal data on our instructions and they are subject to a duty of confidentiality.
We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.
11. Third-party links
12. Data retention
We will only keep your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of research or satisfying any legal, accounting, or reporting requirements.
To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorized use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.
In some circumstances you can ask us to delete your data; see Your legal rights below for further information.
In some circumstances we may anonymize your personal data (so that it can no longer be associated with you) for research or statistical purposes in which case we may use this information indefinitely without further notice to you.
13. Your legal rights
Because your privacy and the security of your data is important to us, we have aligned our practices with the robust and protective requirements under the EU General Data Protection Regulation (GDPR). You have certain rights under data protection laws in relation to your personal data.
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These may include:
- The right of access – the right to request a copy of the personal data we hold about you;
- The right to rectification – the right to make us correct personal data about you that may be incomplete or inaccurate;
- The right to erasure – the ‘right to be forgotten’ where in certain circumstances you can ask us to delete the personal data we have about you (unless there’s an overriding legal reason we need to keep it or if it has already been used for a scientific study);
- The right to restrict processing – the right for you in certain circumstances to ask us to suspend processing personal data;
- The right to data portability – the right for you to ask us for a copy of your personal data in a common format (for example, a .csv file);
- The right to object – the right for you to object to us processing your personal data (for example, if you object to us processing your data for direct marketing); and
- Rights in relation to automated decision making and profiling
These rights are subject to certain rules around when you can exercise them. You can see a lot more information on them, if you are interested, on the UK Information Commissioner’s Office website.
If you wish to exercise any of the rights set out above, please contact us at firstname.lastname@example.org
You will not have to pay a fee to access your personal data or to exercise any of the other rights as listed above unless your request is clearly unfounded, repetitive or excessive in which case we may require a nominal fee to cover our costs. Alternatively, we may refuse to comply with your request in these circumstances.
We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.
We will respond to all legitimate requests within 30 days. Occasionally it may take us longer if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.
You have the right to make a complaint at any time to a supervisory authority [such as the Information Commissioner’s Office (“ICO”) in the UK (www.ico.org.uk)]. We do hope, however, that you will contact us first so that we may do everything possible to correct the situation.
14. International transfers
The TCC has a global mission and it, or its service providers, may process, transfer, and store information about our users on servers located in a number of countries outside the European Economic Area (EEA), including in the United States. Since we are committed to protecting your information, we take steps to ensure that there are appropriate safeguards in place when we transfer that data.
Your data will be transferred to the United States. Data protection laws may be less stringent than in your country. To ensure that your data is adequately protected, we transfer your data subject to suitable safeguards being in place.
To find out more about how we safeguard your information (including obtaining a copy of such safeguards), please contact us at email@example.com.
15. How to contact TCC about privacy
It is important that the personal data we hold about you is accurate and current. Please keep us informed if your personal data changes during your relationship with us. You can do this by updating your account or contacting us at firstname.lastname@example.org. Thank you.