Seizure Tracker LLC (also called "Seizure Tracker," "ST," "we" or "us") provides a set of services to help with collection of patient-reported data about seizures. We are committed to being transparent with you about the data we collect, and the way it is used and shared.
1.3 Our Mission:
Seizure Tracker's goal in stewarding its seizure patient dataset is to enhance the patient interface and the tools available to patients and their healthcare providers and families.
All Seizure Tracker services and tools are built with the following guiding principles: 1) ST puts the patient and the patient's family's interests as its highest priority. 2) All ST data collection tools focus on improving the patient's communication with healthcare providers, with the goal of improving clinical outcomes. 3) Any research performed using ST data, and any resulting tools or clinical practices, should focus on improving the patient's communication with healthcare providers, with the goal of improving clinical outcomes. 4) Patient privacy is a primary concern of all clinical and research use of ST Member data.
1.5 Services; Consent
Section 2: Information We Collect
You provide data to us in various ways. You may create an account; you may also enter your personal health data and log your seizures, and that may help you get more from our Services. We also collect some data from you automatically when you visit the Services.
You provide us with data when you create an account with us, and when you post data to that account.
To create an account with Seizure Tracker, each Member provides data to us, including a username, password, and a valid email address. You have choices about the information you post, save, share, or upload to the Services. If you create an account, you may choose to provide us with more personal data, which may include additional contact information, and health information such as age, medical conditions, medications prescribed or taken, and other medical data. Adding this information may help you get more from our Services, including allowing you to use our tools and graphical representations to track your health data over time, or to create reports that you can share with healthcare professionals. It is always your choice whether to include sensitive information, personal information, health information, or any other information when adding data to your account. We collect personal data from you when you provide, post, or upload it to the Services, such as when you fill out a form, respond to a research request, create a graphic using one of our tools, record an event, interact with a smart speaker application, submit a link to a video, save data to our tracking tool, communicate with us to give feedback or request information or assistance, or respond to a survey.
Please do not add data to your profile that you do not wish to share with ST, and do not include data that is materially false.
2.2 Family Member Accounts
Seizure Tracker does not allow minors to create accounts or upload personal information.
You agree to follow our rules and all laws about data.
2.3 Information We May Collect Automatically
We track your visits and use of our Services, which may include mobile apps.
We maintain digital records of data about when you visit or otherwise use the Services, which may include our websites, apps, and any other technology, such as when you view or click on content, install the app, click on links, submit data, or create reports or visualizations of the data using our tools. We use log-ins, device information, and IP addresses which may identify you and which allows us to log your use and associate data with your account, if you have one.
We collect data through cookies and similar technologies. You can opt out of some cookies, but some cookies are required to use parts of our Services.
We may receive data from your devices and networks, including location data.
When you visit or leave our Services, we may receive the URL of the site you came from and the site you go to next. We also get information that might include your IP address, proxy server, operating system, web browser and add-ons, device identifier, and your ISP or mobile carrier. If you use our Services from a mobile device, that device may send us data about your location, and sharing location data is one permission you grant when you install the app to your device, but you can change that in your account settings. Most devices allow you to prevent location data from being sent to us, and we will abide by your device and account settings. It is also possible that, when you are accessing the Services through a browser, we will learn the country where you are located from your IP address.
We may record and store links to your third-party files and data.
You can use our app to record or capture a seizure event. You may be required to grant our app access to your device's microphone, camera, and image library, in order to allow that functionality. ST's apps allow you to upload media files to YouTube, and we store a link to each YouTube file so that you can access it through our app, but at present we do not store the media file itself. When you capture an event, the app may record your location data, which you may choose to use, through one of our tools, to create map files of your events on Google Maps. A link to those maps may be saved to and accessed through our Services. You may use Amazon's Alexa voice-enabled application to operate certain functions within our Services, and Amazon may record that use or data about you. We are not affiliated with YouTube, Amazon, or Google Maps and are not responsible for your use of those or other third-party services, even if you share data with them through or in connection with your use of our Services. Please remember that third parties' use of your information will be governed by their own privacy policies and terms of service.
2.4 Communication or Reports
If you use our Services to communicate, or to create reports about your data and send those reports to others, we learn about that.
If you communicate with healthcare professionals using our Services, then we record that information. For instance, by assembling data from your account using a tool through our Service to create a report on your seizures, when you send it to a health professional, we learn about that report and that message. If you send messages using our service to an email address, we keep records of that email address, and if you enter email addresses into a contacts list, we store that contacts list for you to use and re-use those email addresses at your convenience. We collect the following information when you send or engage with any messages between you and others through the Services: we collect information about you when you send a message, and we record the time of the message, the recipient, and the content, including any report sent and any comments attached. Other communication through our services may include polls and surveys of our users conducted through our Services. You are not obligated to respond to any polls or surveys, and you always have choices about what information you share with us or what messages you send through our Services.
We are improving our Services, which means we get new data and we create new ways to use data.
Section 3: How We Use Your Information
We use your information to provide, support, personalize, and develop our Services. We also make research opportunities available to our users, and promote our Services to the broader public, to try to promote better patient communication and health outcomes.
When you create an account and record information on our Services, ST has access to that data, and may allow sharing of data in several ways.
We use your data to authenticate you and authorize access to our Services. We also use your data to allow you to track your seizures, to create visualizations, to use our tools in various ways, and to create reports and improve patient communication. You may upload and store data with our app or other Services, and you may share that data with a healthcare provider, you may keep records of that data or track it over time using one of our tools. Information that you create and share may be seen by the people and organizations with whom you share it, and it may be shared in a research context. Where we have made settings available, we will honor the choices you make about who can see content or information that you share. We are not obligated to publish any information, data, or content on our Service and can remove it in our sole discretion, without notice to anyone.
We use your data to provide you our Services, and to develop our Services and conduct research.
We use data, including public feedback, your personal data, user account information, Visitor data, Member data, survey results, customer support information and interactions, and usage information, to provide you with the Services. We also use it to conduct research and to develop expanded or new Services, to protect your account and our Services, to provide you and others with better Services, to improve communication with healthcare providers, to create more personalized User experiences, to promote our Services and increase membership and engagement with the Services, and to research trends and help researchers understand and improve patient outcomes.
We use our dataset for certain medical research projects.
In response to a groundswell of interest from our Users in using ST data to promote and facilitate medical research to improve clinical outcomes, ST is sharing some limited data with medical researchers under carefully managed conditions. Certain sharing of data for research purposes is done in an anonymous, de-identified way, using our systems to de-identify and un-link the datasets shared with researchers from any personally identifying information, including the account information, of the Members. Other research relationships may be initiated by you, the Member, through our Services, allowing you to share more of your information with specific research institutions, research projects, or studies, if you choose. That information may or may not be anonymous, and you control how much and whether to share information through your account settings. Once you have chosen to participate, you can withdraw from a study at any time. More information on how a Member can opt out of sharing data for future research requests is available at the Research Opt-Out page. However, those choices are only available for datasets created and sent after an opt-out request is made, and cannot be applied after the fact. Once data is fully anonymized and sent to researchers, it is impossible for ST to link a given piece of data to a particular User, and so it is not possible to go back and take a particular User's data out of an anonymized dataset, once created.
ST may help healthcare providers research the epilepsy and seizure patient community.
Unless you opt-out before the fact, you may choose to allow researchers access to any of your data, information, or content in an anonymized form so that they can perform research that we all hope will improve clinical outcomes for seizure patients. ST may share data with researchers when it expects that the research will positively impact ST Users.
Research using ST data may help medication and device manufacturers understand the community's needs.
ST may share data in the form of compiled reports for industry collaborators who are focused on new therapy development. These compiled reports are presented after internal review by ST, which is presented as aggregated and anonymized subsets of ST data rather than personal data, and which may include textual and visual representations of population-based data.
ST may do outreach to help medication and device manufacturers bring safe therapies to patients.
We will reach out via your contact information provided to make ST Members aware of research projects that are specific to their medical needs as determined internally by the data entered into the ST system. ST may use the contact information of our Members to contact you directly, unless you opt out of receiving targeted information about a specific research project, which can be done by visiting the Member's account settings page.
We may use data to generate aggregate insights.
We use your personal information to produce aggregate insights that do not identify you. For example, we may use your data to generate statistics about our Users, both Members and Visitors.
Research focused on improving and adding to the Services we provide.
ST may research our Members' and Visitors' use of our Services, and how that use impacts health outcomes and access to new treatment options and research in the field. ST allows you to stay informed about news, research, and publications that involve datasets based on our User information. That service allows our Users to learn about the latest trends and therapies, as well as the impact that their collaborative efforts may be having on clinical treatment for people around the world. To access historical information and resulting publication on past research, follow this link: Past Research/Publications.
We contact you and enable communications between Members and their healthcare professionals and others. We offer settings to control what and how often you may receive some types of messages.
We may contact you through email, phone (if you provide us with that information), notices posted on our websites or apps, and other ways through our Services. We will send you messages about the availability of our Services, security, research requests, survey invitations, password reset requests, customer service replies, and other service-related issues. We also may send messages about how to use the Services, reminders, and promotional messages from us and our partners. You may change your communication preferences at any time in your account settings. Please be aware that you cannot opt out of receiving service messages from us, including security and legal notices. We also enable communications between you and others, through our Services, including sending reports to email addresses that you provide.
3.4 Communication Archive
Certain Users may need to store their communications outside of our Services.
For legal or professional compliance, some Users may need to archive their communications and patient messages and reports, and will use the services of others to provide those archival needs. We may allow or enable such archiving outside our Services. For example, a healthcare professional may keep a record of a report which has been shared by a Member with that person, in order to maintain that person's professional obligations and client recordkeeping. We do not maintain those records or guarantee ongoing access to Member reports, but we know that once shared with a third party, like a healthcare professional, duplicates, copies, or backups of that information may be made, and we make no representations about the accuracy, availability, security, or privacy of those archives.
3.5 Customer Support
We use data to help you and to fix problems.
We use data collected through Customer Support, which can include your communications, when it is needed to investigate, respond to and resolve any complaints and Service issues or bugs.
We promote our Services to you and to others.
We use data and content about Users for research and communications promoting our Services. We use the data to promote our membership and User growth, as well as to promote engagement with our Services.
3.7 Security and Investigations
We use data for security, fraud prevention, and investigations.
3.8 Service Providers
We may use others to help us provide you our Services.
Your use of other service providers is at your own risk.
You may also access other service providers or be directed to other service providers through the use of our Services. For example, you may use our tools to map the location of your seizures using your location data through our app, which may send your data to Google Maps, or you may upload your own audio or video files to YouTube when using our app. You also may be using Amazon's Alexa voice-enabled application to activate some of our Services. We are not affiliated with Amazon, Google, YouTube, or other third-party service providers, and your use of their services and sharing of your information with those companies will be governed by their own privacy policies to which we are not a party. Your use of those services is at your own risk, and ST takes no responsibility for the security, privacy, or availability of information you share with or send to third-party service providers.
3.9 Legal Disclosures
We may need to share your data when we believe it to be required by law or to protect your rights and security.
We will need to disclose information about you whenever we are required to do so by law, subpoena, or other legal process or if we have a good faith belief that disclosure is reasonably necessary to (1) investigate, prevent, or take action regarding suspected or actual illegal activities or to assist government enforcement agencies; (2) enforce our agreements with you; (3) investigate and defend ourselves against any third-party claims or allegations; (4) protect the security and integrity of our Services; (5) exercise or protect the rights and safety of ST, or our Members, personnel, or others; or (6) in a legal dispute. When appropriate, in our judgment, we may attempt to notify our Members about legal demands for their personal data unless prohibited by law or court order or when the request is an emergency. We may choose to dispute such demands when we believe, in our sole discretion, that the requests are overbroad, vague, or lack proper authority, but we will comply with such demands if we deem it appropriate.
3.10 Change in Control or Sale
Section 4: Your Choices and Obligations
4.1 Data Retention Policy
We keep most of your personal data for as long as we keep our Services active.
We retain the personal data you provide while your account remains open or as needed to provide you the Services. Even if you only use our Services infrequently, we will retain your information and keep your account open until you decide to close your account. There is no regular erasure of older data, which is generally retained and backed up to try to maintain your and our access to the data when needed. If you close your account, we will delete your user credential information and profile, which de-identifies the associated information. In some cases, we may choose to retain certain information in a depersonalized, de-identified, or aggregated form. We may also retain personal data after you have closed your account if reasonably necessary to comply with our legal obligations (including law enforcement requests), to meet regulatory requirements, to resolve disputes, to maintain security, to prevent fraud and abuse, to enforce our User Agreement, or to fulfill your unsubscribe requests, if any. Information you have shared with others may be retained by those others after you have closed the account or deleted the information from your own profile. We do not control data that may be copied out of our Services once you have shared access to your reports, or once your anonymized data has already been added to a research dataset. To provide you with the Services, we may store, process, and transmit data in the United States as well as locations around the world, including those outside your country. Data may also be stored locally on the devices you use to access the Services.
4.2 Rights to Access and Control Your Personal Data
You can access or modify your personal data. You have many choices and options about how your data is collected, used, and shared.
We provide you with many choices about the collection, use, and sharing of your data, from deleting or correcting data you include in your profile and controlling what information you upload to our system, which reports you create, and when or whether you send those reports to anyone else through our Services. You can control whether you save contacts to your account, whether you create an account and log or track any seizure information, whether you use our tools to create reports and visualizations, and whether you connect with our research partners. We allow you to opt out from a given research project or from all research by changes your account settings preferences or visiting the data sharing tool within your Member account.
Section 5: Other Important Information
We monitor for and try to prevent security breaches. Please use care when sending any personal information to us or anyone using the Services.
We implement security safeguards designed to protect your data, such as monitoring for breaches and abnormal activity, and using encryption in certain circumstances. We regularly monitor our systems for possible attacks, breaches, or security updates. We also use reasonable efforts to back up the data and to try to make it regularly available to our Members for their use of the Services. However, we cannot warrant the security of any information that you send us or that you store on our Services. There is no guarantee that data may not be accessed, disclosed, altered, corrupted, lost, or destroyed by breach of any of our physical, technical, or managerial safeguards. Please take all reasonable precautions to secure your password and account access, to store and retain alternate copies of any data you may need to access, and to notify us if you know of any security breach or inaccurate information.
Members are responsible for your User Account information, including maintaining the security of your passwords and devices.
You should secure your passwords, and you agree that you are responsible for the use of your account by anyone, including a trusted person, with whom you share your login information or password, or by anyone with whom they share that information. If you are aware of a security breach that may compromise your account, other ST information, or the information of others using our Services, it is your responsibility to notify us by emailing our Customer Support at: Support@SeizureTracker.com. If ST is aware of a public breach that affects your personal data, we will make an effort to notify affected Members within a reasonably prompt time, once we determine that notification is appropriate. If you have questions or complaints, please first contact Customer Support at the email above.