(Last Updated June 20th, 2012)
StudyCue, LLC (sometimes referred to herein as the “Company”) provides a platform for individuals to create and run interactive experiments geared towards better understanding health behaviors. The Company has public engagement at the core of its mission and provides the website found at www.StudyCure.com (the “Website”) to help people better understand their health and start to collectively generate information relating to health behaviors and our understanding of how they affect the body. We strive, with full transparency, to outline the benefits and risks of being part of this Website, including those related to privacy.
- information we collect about you
- how we use the information we collect
- blogging and social networks
- privacy settings
- privacy settings
- changing or deleting your personal information
- institutional review
- how we protect your personal information
- consent to electronic communications
- minors’ privacy
- links to other websites
- how to contact us
INFORMATION WE COLLECT ABOUT YOU
In General. While you do not have to provide personal information to use this Website and the Materials, in order to use the features of this Website and the Materials, in order to generate meaningful results from your experiments and in order for us to better recommend research to you, you will have to provide us with some information. You will provide this information to receive information about experiments that may be of interest to you and to participate in user-generated experiments and post your own experiments. We collect your personal information primarily in order to provide you with related experiments within our Website and in the future we may also match you with formal research studies for which you may be qualified based on the information you will provide. By providing StudyCue, LLC with the personal information required to identify you, you understand that StudyCue, LLC will access, retrieve and store that content in order to make it available and viewable through the Website and to match you with potential research projects of interest to you.
Risks and Benefits. While our goal is to help users engage in furthering medical and scientific research, there are no guaranteed benefits to using this Website. However, we believe that by bringing the research process to people we can accomplish two important goals – that is, we can begin to give meaning to behaviors people change from day to day, and we can begin to help people better understand research and suggest potential scientific studies for which they may be a good match.
There are no known privacy risks. Our users will know whether they are created a public. For public experiments, a creator’s username will be visible. However, no user’s will have information designated private available to be viewed by other users, unless specific permission is given by that user; only aggregated results that are not tied to any specific user will be widely available to all persons using this Website. Notwithstanding this level of control that users have about what content they make public, there is a possibility that users may feel uncomfortable sharing information online. It is possible that a Member could be identified using information shared on the Website (and/or in conjunction with other data sources). A Member could be discriminated against or experience repercussions as a result of the information shared. For example, it is possible that employers, insurance companies or others may discriminate based on health information.
Members should understand that others can view the Shared Data (as defined below) in the system.
Accuracy of Information. The Company cannot guarantee the identity of any other Members with whom a Member may interact while using the Website or who may have access to a Member’s Shared Data. Additionally, we cannot guarantee the authenticity of any data that Members may provide about themselves.
Shared Data. Some of the information that Members provide about themselves may be shared with the Website community, Partners, and others (“Shared Data”). The Shared Data will be deidentified and/or aggregated unless the user has chosen to make the Shared Data public or otherwise granted permission to share the Shared Data on an individualized basis. Examples of Shared Data that Members may submit through the Website, including through a user’s profile, may include:
•Biographical information, e.g. photograph, biography, gender, age;
•Condition/disease information, e.g. diagnosis date, first symptom, family history;
•Treatment information, e.g. treatment start dates, stop dates, dosages, side effects, treatment evaluations;
•Symptom information, e.g. severity, duration;
•Primary and secondary outcome scores over time, e.g., Mood Map, Quality of Life, weight;
•Laboratory results, e.g. CD-4 count, viral load, creatinine;
•Genetic information, e.g. information on individual genes and/or entire genetic scans
•Individual and aggregated survey responses;
•Information shared via free text fields, e.g. the forum, treatment evaluations, surveys, annotations, journals, feeds, adverse event reports; and
•Connections to other people on the Website, e.g. invited care team member, mentors, feeds, subscriptions.
While using the Website, Members may share personal information that could be used to reasonably identify. When a Member chooses to share personal information via a free text field (e.g., observations or experiment description), and photos or images, the information shall be treated as Shared Data.
Restricted Data. Restricted Data is information that Members enter into certain fields when registering to use or when using the Website will not be shared with others, unless Members specifically consent to this Restricted Data being so shared. The type of Restricted Data that Members may submit through the Website may include:
•Name, as collected as part of registration or in a Member’s account information;
•Email address, as collected and verified as part of registration or in a Member’s account information;
•Password, as collected as part of registration or in a Member’s account information.
Aggregated Data. Members should expect that every piece of information they submit (even if it is not currently displayed), except for Restricted Data, may be made anonymous and subsequently aggregated to share trends and averages with the community, other patients, and Partners. Members are encouraged to share health information, but should consider that information entered in public community forums, makes it more likely that a Member could be located or identified.
Members acknowledge and accept that any information shared through free text or images might be connected to Members’ Shared Data (which may be shared with, sold to, or displayed for others). For example, if a Member puts his or her name or other personal information, including any PHI, into a free text field like the biography, forum, blog or annotations, the Member should know this information may be included in what is shared with, displayed for, or sold to Partners.
Web Beacons and Cookies. The web server used to host this Website may automatically collect certain information from users incidental to a user’s use of this Website and the Materials, such as the name of the user’s Internet service provider; the IP address of the computer the user uses; the type of browser software and operating system that the user uses; the date and time the user accesses this Website; the website address, if any, from which the user linked directly to this Website; the website address, if any, to which the user travels from this Website; and other similar navigation-related information. This information may be used in the aggregate to assist the Company in understanding the Company’s users’ navigation patterns and in improving the Website.
Please note that a user’s IP address and access information may be used by us in the event of that user’s inappropriate conduct in connection with the user’s use of the Website and Materials and our products and services.
We may use standard Internet technology such as “web beacons” to track a user’s use of our Website. We may also include technologies such as web beacons in advertisements or promotions or in email messages to determine whether messages have been opened and acted upon. The information we obtain in this manner may enable us to customize the services we offer our users to deliver targeted advertisements and to measure the overall effectiveness of our online advertising and service features.
Additionally, the Website may utilize so-called “cookies” to provide more detailed information about a user’s Website usage and to provide convenience features to you when you return for repeated visits, which should facilitate access to our Website and personalize a user’s online experience. A cookie is a small data file that often includes an anonymous, unique token, which is sent to your browser from a website’s computers and may be stored on your computer’s hard drive. Two types of cookies are required to use the Website
• Session Cookies are temporary cookies that remain only until a user logs out of the website or exit your web browser. Session Cookies do not store any personal information, only a unique visitor ID number that may be used to ensure Members are properly authenticated and can view Website information.
• Persistent Cookies remain in the cookie file of a user’s browser for much longer, even after the user leaves the Website. Persistent cookies also do not store any personal information. Persistent Cookies store preferences that should persist from visit to visit, like “Remember Me,” and a unique token to enable us to understand how Members use the Website.
All information stored in any cookie would be stored on a user’s computer and only available to this Website when the user is visiting it. Most browsers automatically accept cookies, but a user can usually modify his or her browser setting to decline cookies. If a user chooses to decline cookies, please note that such user may not be able to sign in or use some of the interactive features offered on our Website.
HOW WE USE THE INFORMATION WE COLLECT
Members should expect that every piece of information they submit (even if it is not currently displayed), except for Restricted Data, may be shared with the community of other users and Partners. Members are encouraged to share health information, but should consider that the more information that is entered, the more likely it is that a Member could be located or identified.
How Shared Data is used. Shared Data is viewable via a user’s profile and through aggregated reports that are made available to other Members. In some instances, this Shared Data is also viewable to non-members as part of aggregated data reports. We report publicly Shared Data in aggregate, such as the number of people participating in a particular experiment. If a Member chooses to designate his or her experiment as “public”), the Member’s username can also be viewed by non-members.
In addition to serving the individual needs of our Members, the Company provides Shared Data, in an aggregated format to Partners and other third parties for use in scientific research and market research. When sharing or selling this information, the Company removes Members’ Restricted Data to reduce the likelihood of re-identification prior to sharing information with Partners.
The Company may also periodically ask Members to complete short surveys about their experiences (including questions about products and services). Survey responses are analyzed, combined with Members’ Shared Data and shared with and/or sold to Partners. Member participation in these surveys is not required, and refusal to do so will not impact a Member’s experience on the Website.
Unless required by law, the Company does not provide Restricted Data to such regulatory bodies, although we reserve the right to contact Members for follow-up at the request of agencies or Partners.
This Website is a public forum, and Members acknowledge and accept that any information shared through free text or images might be connected to Members’ Shared Data (which may be shared with, sold to, or displayed for others). For example, if a Member puts his or her name (or other personal information, including, but not limited to any PHI) into a free text field like the biography, forum, journals or annotations, the Member should know this information may be included in what is shared with, displayed for, or sold to Partners.
How Restricted Data is used. Restricted Data is not automatically shared with, sold to, or displayed for other Members or Partners. Nevertheless, specific instances where Restricted Data may be used include, but are not limited to, the following:
• If a Member provides a date of birth, the Member’s current age will be viewable via the Member’s profile;
• If a Member chooses the “Public” privacy setting (see below), StudyCue, LLC and others may use public profiles in reports, conference presentations, media mentions, etc.
• If a Member agrees to participate in a media interview (as arranged by StudyCue, LLC), StudyCue, LLC will share the contact information the Member provides (i.e. name, email, telephone) with the reporter for the purpose of conducting an interview;
• If a Member makes a request, StudyCue, LLC may use Restricted Data, including sharing the Member’s Restricted Data with software/service vendors, for the purpose of fulfilling the request. Examples where the Restricted Data may be shared include requesting to receive the Company’s newsletter via email, requesting an email response from the Company’s support team, and requesting any promotional products, when made available, be mailed to the Member’s residence.
More Disclosure on Sharing Your Personal Information With Others.
We may share your information with third parties, such as licensors, licensees and sublicensees, only in accordance with our legal and contractual arrangements with such third parties. Such third parties have their own privacy policies, over which we have no control; we are not responsible or liable for any of their actions or omissions.
In addition, we may share aggregated information of our users with advisors, advertisers and investors for the purpose of conducting general business analyses. These third parties also have their own privacy policies, over which we have no control; we are not responsible or liable for any of their actions or omissions.
Any third party who contacts you will need to be instructed directly by you regarding your preferences for the use of your personal information by them.
In addition, the Company reserves the right to provide such information to the Company’s officers, managers, employees, independent contractors, agents and representatives to the extent necessary to enable them to perform, on the Company’s behalf, certain Website-related services, including, but not limited to, web hosting and maintenance services, customer service, transcribing health records to your account, email management, database management, web analytics and improvement of the Website’s features, or to assist us in analyzing how our Website is used. We may disclose PHI, such as name and contact information, to any person performing audit, legal, operational, or other services for us. We will use information which does not identify the individual for these activities whenever feasible. Information disclosed to vendors or contractors for operational purposes will be limited to the minimum necessary to perform their task and may not be re-disclosed to others by such a vendor or contractor. These third parties have access to your PHI and health records only to perform these tasks on our behalf and are obligated not to disclose or use it for any other purpose.
The Company reserves the right to disclose your personal information to any third party, if the Company believes that it is required to do so for any or all of the following reasons:
Your personal information may be shared with, or transferred to, a third party in the event of a transfer of ownership or assets of the Company or the Company’s bankruptcy.
BLOGGING AND SOCIAL NETWORKS
There are two privacy levels a Member may choose on the Website:
•Anonymous: Your username will not be seen in connection with any experiment you create.
•Public: Non-members and Members can see the user’s username.
Members may change their privacy level at any time. Profiles designated “public” may be indexed or stored by Internet search engines (e.g. Google) or other independent sites, which means a Member’s username may come up in the search results by anyone on the Internet, even after switching privacy levels.
We may post customer testimonials and feedback on the Website which may contain personal information. We will attempt to obtain a Member’s consent via email prior to posting the testimonial or feedback in conjunction with such Member’s personal information.
You can choose not to provide us with certain information, but that may result in your being unable to use certain features of our Website because such information may be required in order for you to obtain services from StudyCue, LLC.
When you initially use our Website, you will be given a choice as to whether you want to receive e-mail messages or newsletters from StudyCue, LLC. You may later modify your choice by contacting us. Please refer to the Section entitled Changing Or Deleting Your Personal Information.
CHANGING OR DELETING YOUR PERSONAL INFORMATION
There are additional ways that you may opt out from receiving promotional email or mail from us concerning the Website and products and services that we offer.
Users may opt-out at any time by using the unsubscribe mechanism within the email. The unsubscribe mechanism allows Website users to manage other subscription preferences to email alerts and special offers but does not allow a user to opt-out of receiving transactional email, such as subscription confirmation and responses to direct requests. We will implement your opt-out request within ten (10) business days of receipt in most instances, but shall not be liable for our failure to do so within this time frame.
We may retain your personal information for aggregated data purposes, and we will retain your information in a “do not promote” file in our database, and you will receive no further communications from us unless you consent otherwise, except as provided below.
Please also note that removal from our active database will not automatically result in removal of your personal information from any third party’s database concerning any product or service that you may have accessed through this Website, including, but not limited to any of our Partners’ databases. To remove information from a third party’s database, you will need to contact such third party directly.
You may cancel your subscription at any time. If a Member chooses to cancel his or her membership, StudyCue, LLC will not display or sell the data in that account, as of the date of deactivation, except in conjunction with a sale of the Company or the Website itself. However, the Member’s data will remain in the system for auditing purposes, and research conducted prior to the deactivation of a Member’s account will still include the Member’s data.
HOW WE PROTECT YOUR PERSONAL INFORMATION
The Website has implemented commercially reasonable security measures (including physical, electronic and procedural measures) in place to help safeguard your personal information from unauthorized access and disclosure and to protect against the loss, misuse and alteration of the information under our control. For example, only authorized employees and authorized third-party service providers are permitted to access personal information, and they may do so only for permitted business functions. In addition, we use encryption in the transmission of certain sensitive personal information between your system and ours, and we use firewalls to help prevent unauthorized persons from gaining access to your personal information.
StudyCue, LLC is not regulated by the Health Insurance Portability and Accountability Act (“HIPAA”). For more detailed information on how our Website protects your information compared with a HIPAA compliant service, please click here. The researchers who are Partners of ours should be particularly cognizant of their responsibilities for maintaining patient confidentiality, including without limitation their obligations under HIPAA. However, we are not responsible for the actions or failure to act by any of our Partners in respect of your personal information, including, but not limited to PHI.
We want you to feel confident using our Website. However, no system can be completely secure. Although we take steps to secure your information, we do not promise, and you should not expect, that your personal health information, searches or other communications will always remain secure. Users should also take care with how they handle and disclose their personal information.
Please note that the technical processing and transmission of your personal information may involve transmissions over various networks and changes to conform and adapt to the technical requirements of connecting networks or devices. Your personal information may be transferred to, and maintained on, computer networks located outside of the state, province, country or other jurisdiction in which you reside, and the jurisdiction in which these computer networks are located may not have privacy laws as protective as the laws in your jurisdiction.
CONSENT TO ELECTRONIC COMMUNICATIONS
StudyCue, LLC may be required by law to send Communications to you that may pertain to the Website and Materials and the products and services you choose. You agree that we may send Communications to you by email. You consent to receive these Communications electronically. The term “Communications” in this Section means any notice, record, agreement or other type of information that is made available to you or received from you in connection with the Website and Materials and the products and services you choose to receive from us.
Notwithstanding anything to the contrary, you must be 18 years of age or older to use this Website.
We are committed to protecting the privacy of minors. For that reason, we will not knowingly collect on-line or off-line contact information from minors without prior parental consent or parental notification (“Parental Involvement”). Such Parental Involvement would include an opportunity for the parent to prevent use of the information sent to us by the minor and the minor’s participation in the activity.
LINKS TO OTHER WEBSITES
Safeguarding information to help protect you from identity theft and the practice known as “phishing” is of great importance to StudyCue, LLC. We do not and will not, at any time, request your credit card information, your login information or national identification numbers in a non-secure or unsolicited e-mail or telephone communication.
HOW TO CONTACT US
StudyCue, LLC 175 Varick Street New York, NY 10013 info@StudyCure.com