Effective: June 19, 2008
Last update: March 25, 2010
Information We Collect
CureTogether enables members to record, track, and optionally share their health information; and make informed treatment decisions by learning about others with similar health profiles. The information we collect is voluntarily submitted by members directly and/or through member-authorized partners. Members can enter as much or as little information as they like, as part of the registration process, sharing resources, defining a profile, or responding to opt-in surveys. The types of information collected includes:
Uses of Personal and Health Information
|* Personal Information - Personal information is information that uniquely identifies members, such as name, address, contact information (e.g. email address, phone number), credit card information, photo, biography, date of birth, and gender.
|* Health Information - Health information is information members upload about their health status, as part of their user profile or in answer to CureTogether research surveys. Examples of health information are details about conditions or diseases that members have, including the first notice of symptoms, date of diagnosis, co-existing conditions, family history, quality of life effects, list and severity of symptoms, timeline or progression of disease, results of health tests or genetic tests or biometric measurements, details of treatments tried (e.g. dates, dosages, measures of effectiveness in terms of quality of life), and other factors that could possibly be related to or associated with the disease or condition (e.g. environmental factors, personal traits, ethnicity, and other factors as defined by members). As part of CureTogether's focus on research to understand disease, members will have the choice to participate in short, periodic surveys, which are optional and voluntary. To provide the highest quality features and benefits for a great member experience, we may also review members' Personal Information internally as needed.
|* Resource Information - Resource information is information members post about treatments, doctors, studies, things to read, or support resources, or reviews about their experience with the posted resources. Members can choose to post resources and/or reviews anonymously or with a screenname linked to their profile. Posted resources and reviews will be visible to all members and visitors to the site, to help people learn from each others' experiences.
|* Site Usage Information - Site usage information consists of log files and cookies, which are required to use the CureTogether service. Log files are automatically collected and include information about browser/operating system types, movement to/from and around the website, time spent, and IP address/ISP. Log files are used on an aggregate level to analyze trends and understand member demographics and behavior on the CureTogether website, and are only linked to Personal Information for specific cases to resolve member issues. Cookies are small data files that do not contain personal information. Cookies are sent to a browser from a visited website and stored on a member's computer. We use session cookies, that persist only while the browser is open and at the CureTogether website, and persistent cookies, that remain in the browser's cookie file even after leaving the CureTogether website. These cookies enhance a member's experience; with easier navigation, improved security of personal information, and additional functionality. We also use this information to improve our services for our members. Although it is non-personal, site usage information is linked to personal information if a member is logged into our website.
We use personal information we collect to authenticate website visits/usage, inform members of relevant services and products, and maintain and develop our website. We use health information to conduct scientific research studies and we make the aggregate, anonymized health information open to allow members to conduct their own analysis and potentially make discoveries. To allow other members to learn and make treatment decisions for themselves, aggregate personal and health information will be available to all members. Members will also be able to see the parts of each others' profiles that are publicly shared.
CureTogether is dedicated to conducting open source, member-driven, patient-empowered scientific research studies. We may use or open up any information you provide for this research purpose, in an anonymized and aggregate way, unless you explicitly decide to exclude your information from the studies. We are working with top researchers across the country to ensure our research is scientifically sound and conducted in a respectful way. We are also opening up de-identified information to approved researchers around the world to have as many minds as possible working on making discoveries. Our goal is to help people find both short-term and long-term answers that will help reduce their suffering.
CureTogether will not rent, sell or share any personally identifiable information for marketing purposes. We may disclose personal information for other purposes, such as email communications from approved vendors and partners (optional and anonymous), anonymized data for research or commercial use, scientific research study partnerships (optional and anonymous), or if required by law.
Privacy and Security
If you choose to make your information publicly available, other members will be able to see your information and learn directly from your experience. However, it is your choice and right to keep as much information confidential as you like. Members can choose to have their information freely available, only used for research purposes, visible only by approved friends, or kept completely private.
Members can change privacy settings at any time, but completely public profiles may be indexed by Internet search engines such as Google. CureTogether is also building public registries for the diseases we study, allowing members the option of contributing some personal information to a publicly viewable registry. We encourage sharing as much as you are comfortable with to maximize the benefit to everyone in the community.
If you choose to delete your account, all personal and health information is removed from our databases. However, any personal or health Information you have authorized to be used for research before requesting deletion will not be removed from studies that are in progress or completed.
CureTogether takes members' trust seriously, and we keep your data secure using commercially reasonable technical precautions. Protecting your personal information is a shared responsibility, so we encourage our members to keep their passwords and other sensitive information private and secure.
Risks and Benefits
CureTogether has no way of guaranteeing the validity of the information that members may submit and make publicly available, nor can we authenticate the identity of any member, so any information you review is at your own risk and should be discussed with your doctor or alternative medical provider. There is also the risk of discomfort with sharing health information online. Members are free to stop or opt out of any parts of the CureTogether surveys or website that they are not comfortable with.
Possible benefits of using the CureTogether website include the overall positive effects of tracking one's health and well-being over a period of time. We cannot guarantee any specific benefits, but our goal is to help patients reduce suffering and make better treatment decisions, while contributing to long-term research and understanding of their diseases or condition.
If you have questions or comments about this policy, please contact us at firstname.lastname@example.org