Privacy Policy

SURVIVORSHIP CARE TEAM WEBSITE

PRIVACY POLICY

OUR COMMITMENT TO PRIVACY

This website is managed by the Survivorship Care team at UC San Diego. The Survivorship Care team is committed to protecting your privacy. This Privacy Policy and Notice (‘Policy’) describes how the Survivorship Care team uses, releases, and protects any personal information that we receive from an individual’s use of this website.

As a user of this website, you have the right to know how we protect personal information that we receive from you. Please read these terms and conditions of use carefully before using this site. By using this site, you agree to these terms of use. If you do not agree to these terms of use, please do not use this site.

HEALTH INFORMATION

All health and health-related information contained within the Survivorship Care website is intended to be general in nature and should not be used as a substitute for medical treatment by a health care professional. Your health care provider should be consulted regarding matters concerning the medical condition, treatment, and needs of you and your family.

Every effort is made to ensure that the material within this website is accurate and timely, however, this should not be considered official and should be confirmed with other reliable sources. This information is provided without warranty for quality or accuracy.

YOUR ROLE, RESPONSIBILITIES, AND RISKS

You should be familiar with how our website works and read all of our policies. You should be aware of the type of information collected on this website, how it is stored and used. You should know all health and health-related information in this website should not be used as a substitute for professional medical advice and should not be taken as treatment suggestions or relied upon as the basis for any decision or action.

This website is not intended for use by individuals who have not reached the age of legal majority in their country. Specifically, that is the age at which a person is recognized by law to be an adult and responsible for any legal obligations created by his or her actions.

YOUR RIGHTS AND CHOICES

You have the right to know the information collection and storage practices of this website. You may change your mind at any time after you have provided any information and have the right to know how to opt-out of any information collection, release, or use. You have the right to know how your information will be used and by whom. You have the right to know to whom we may release your information to. You can choose at any time to not receive emails from us by contacting us as described in the section of this privacy policy titled ‘Access, Correction, Deletion, and Removal of Personal Information.’

We will protect any personal information you provide to us through the website at all times in accordance with applicable laws, industry standards, and our legal obligations. We will notify you via updated Privacy Policy if our information collection and storage practices change. If for some reason your personal information was released to or accessed by unauthorized persons we will notify you by email as necessary to help protect you from harm, embarrassment, or distress.

THE INFORMATION WE RECEIVE

The Survivorship Care team may receive personal information through direct user input and the Survivorship Care team also automatically receives information about how you use our website through “cookies” and web logs. This Policy applies to all information received through the website, both automatically and through direct user input. We receive this information in several ways, which are described below.

1. User Input

Registration is not required for use of this website. Anyone can visit the website and read about our research studies. To participate in a research study, users may be asked to provide their name, email address, telephone number and other contact information. Users will be asked to fill out the screening questionnaire to determine their eligibility for the relevant research study offered. In the process of filling out this questionnaire, users are asked to provide certain health information about their medical condition (such as condition severity and symptom characteristics) to match against the eligibility criteria for participation.

Users who meet eligibility criteria for participation based on their screening questionnaire answers are given access to the research study consent to review and sign prior to completing study-related activities. Users may receive a follow-up communication from a Survivorship Care team member about participation in the study when necessary information about the study needs to be shared with or communicated to the user, or when information needs to be collected from the user.

Users who have previously registered in research studies conducted by the Survivorship Care team on www.youngcancersurvivor.com may receive a communication from that website.

All information provided by users is stored in a secure Survivorship Care database for the duration of the study. Please see sections below about the ways in which Survivorship Care protects users’ information.

2. Web logs

The Survivorship Care team uses standard Web logs that record basic data about people who visit our websites. Examples of information maintained in these logs may include:

  • The date and time of the visit
  • The pages of our website viewed during the visit
  • The IP address of the computer used to visit the site (Computers automatically generate an IP address as they surf the Internet. IP addresses are also used to track new versus return visitors to the website)
  • The type of Web browser used to view our website
  • The website visited immediately before coming to our website

We do not normally seek to identify individuals from Web logs. However, Web logs may be used to identify an individual who we have reason to suspect tried to damage our website or use it in an unauthorized way. If we have reason to believe that there has been a violation of computer security or related laws, we may share our Web logs with law enforcement agencies.

3. Cookies

A cookie is a piece of data or a file that a website can send to your Internet browser, which may then store it on your computer. Cookies store information such as the pages you visited, the website features you used, and the amount of time you visited a particular webpage. They are also a means of keeping track of a user's preferences during a visit to a website. For example, users who search for survivorship care research studies expect the application to "remember" their searches so that this information does not have to be entered again for each search. In order to keep track of such search criteria, Survivorship Care stores a unique identifier in a “temporary” or “session” cookie that only exists during the browser’s session with the website. When a new search is started, the identifier can be extracted from the session cookie and used to request detailed search information for that user from our database.

Our cookies do not find or search for personal information about you and do not link to or record any personally identifiable information.

In addition, visitors clicking through to this website from either Google or Yahoo! search engine sponsored ads will have a cookie placed on their computer for 30 days. This cookie allows Google and Yahoo!, along with Survivorship Care, to measure the effectiveness of their search engine advertising.

No cookies are used to track an identifiable individual's movement through the website or on the Internet. They are only used to enhance the usability of the site. The following cookies are used on our website: Google Analytics cookie; internal session cookies for our online questionnaire and contact information submission forms; and advertising cookies are occasionally used to track how users reach our website.

You always have the right to refuse the storage of cookies on your computer, or to disable and/or delete cookies at any time. It is important that you understand that if you block or otherwise reject our cookies, you will not be able to use certain parts of the website’s essential features. We suggest that you accept cookies because they allow you to get the most out of your website experience, and to take advantage of some of the website’s essential features. By clicking through the website, we understand this means you have accepted our cookies.

This Site does not use third-party cookies.

SHARING INFORMATION WITH THIRD PARTIES

It is possible that we may need to disclose personal information we receive through your use of the website in response to a search warrant, subpoena, or court order. This is a possibility that could confront any record keeper. Disclosures may also be made to protect our legal rights, to protect the security or integrity of our website, to take precautions against liability, or during emergencies if physical safety is believed to be at risk. These types of disclosures are unlikely, but they are possible and so we describe them here.

AGGREGATE DATA USE

The Survivorship Care team combines and uses non-personal information (aggregated data) from our Web logs and the study questionnaires to examine how our site is being used. We will periodically analyze this aggregated data and use what we learn to make improvements to our website. In addition, we may share this aggregated data (which does not contain any personal information which can identify an individual) with our clinical research partners to assist them in better designing their websites or clinical trials. Non-identifiable information in our aggregate database will not be deleted.

ACCESS, CORRECTION, DELETION AND REMOVAL OF PERSONAL INFORMATION

Users may request to access, correct or delete personal information they enter into the website which is inaccurate or incomplete at any time by emailing the Survivorship Care team at ayastudy@ucsd.edu. We will respond to users by email within ten (10) business days.

If you request to receive emails through the website and later decide you do not want to receive such emails any longer, you can use the “unsubscribe” link at the bottom of the email, or contact us at ayastudy@ucsd.edu.

BACKUP FILES

Like all responsible websites, Survivorship Care maintains backup files as a protection against natural disasters, equipment failures, or other disruptions. Backup files protect you and us because they lessen the risk of loss of valuable data. Removing a record from our principal files does not remove that record from any of the backup systems. It may take up to six (6) months before all information in a backup record is completely erased through the normal recycling of backup files. In the meantime, as long as backup records exist, they receive the same privacy and security protections as our other records.

INTERNATIONAL TRANSFERS

Survivorship Care provides this website and its services from the United States of America (USA). Accordingly, any personal information we receive through direct user input will be stored on our servers located in the USA. You should be aware that not all countries offer the same standards of data protection and personal information privacy as those that may apply where you reside. However, your personal information will always be treated and used by Survivorship Care as described in this Website Policy. In addition, Survivorship Care follows the US Department of Commerce’s Safe Harbor principles for off-line, online and manually processed personal data transferred to Survivorship Care from the European Economic Area (EEA) and Switzerland.

INFORMATION SECURITY

Processing personal information in a secure manner is essential to our business and for your protection as a user. Maintaining a secure network and server system is in the best interests of our users. This website has security measures in place to protect the loss, misuse and alteration of the information under our control. We work to protect the security of your information during transmission by using Secure Sockets Layer (SSL) software, which encrypts information you input.

CHILDREN'S PRIVACY

The Survivorship Care team is committed to protecting the privacy of children. This site is not intended for or designed to attract minors. Users under the age of 18 or the age of legal majority in their country should not submit information to our site, and we do not collect information from any user we have reason to believe is a child under the age of 18 or age of legal majority.

ACCOUNTABILITY

The Survivorship Care team is committed to protecting the privacy of our website users. We have posted this Privacy Policy to communicate the specifics of this commitment. In addition, Survivorship Care will address any complaints or questions that our users may have regarding this Policy or its implementation. If you have a complaint or question about our Policy, please email ayastudy@ucsd.edu. The Survivorship Care team will respond to your comments or concerns within ten (10) business days from the time your inquiry is received.

LINKS TO OTHER WEBSITES

Our Website may contain links to other websites. You should carefully review the privacy policies and practices of other websites, as we cannot control or be responsible for their privacy policies or practices. For links to the UC San Diego Health System website properties, please review those privacy terms as they may differ from those on this website.

HOW TO CONTACT US

Should you have questions or concerns about this Policy, please contact us at ayastudy@ucsd.edu

This Policy was last updated on 15 January 2016.