Table of Contents
Smart Patients is an online community where patients and caregivers learn from each other about treatments, challenges, and how it all fits into the context of their experience. Here you can learn at your own level about scientific developments related to your disease, share your questions and concerns with other members, learn from them, and allow them to learn from you.
Smart Patients is committed to protecting the privacy of our users.
Collection of your Personal Information
1. Information Collected from All Visitors to our Website
As background, cookies are small text files that websites can send to your browser, which your computer stores, that can automatically collect server domain names, IP addresses, type of computer, type of browser, and information about what pages are visited. You can set your browser to decline cookies or notify you before accepting cookies, although if you decline them, the website may not function properly. Web beacons are small bits of code embedded in web pages or emails that can be used to communicate with cookies, count visitors, and understand usage patterns.
2. Information Collected from Users Who Choose to Create an Account
After you create an account, you can participate in “Community Discussion,” which may include group email messages, web-based community discussion, discussion archives, and other communications among users.
Your Choices and Information Sharing
Smart Patients gives you important choices about controlling your personal information – whom you let see it, how much, and when. We encourage you to make these choices thoughtfully. Your choices include:
- Whether you want to browse the website anonymously or create an account and provide us your personal information;
- Whether you want to join Community Discussion relating to a particular condition;
- How much health or other personal information you want to share with other patients and caregivers through Community Discussion;
- Whether you want to participate in surveys we may offer from time to time. The nature of the survey and the form in which the results will be disclosed will be explained to you in advance;
- Whether you want to participate in any other opportunity we may offer to share your health information with others. For example, if we think you have written something in a Community Discussion that would be particularly helpful to others facing the same condition, we may invite you to post an excerpt from your comments on our public website. Any such opportunity would be clearly explained to you in advance, and whether you decide to share your information would be entirely up to you;
- Discontinuing active participation or closing your account at any time.
Please see our FAQs for more details.
Information Use and Sharing by Smart Patients
Routine Uses and Disclosures
- We will use the information you provide to provide services to you.
- If you post information to a Community Discussion composed of users who have elected to join that group, we will disseminate your post to all members of that group. In most cases, the information will be shared immediately, although, in unusual cases, a Community Manager might postpone or block a post, as explained in our Terms of Agreement. Please be aware that, even without your permission, it is possible that recipients may disclose your information outside the group. You should thus exercise discretion when deciding how much information to share in Community Discussion.
- We will fulfill directions you give us about sharing your information with others or posting it publicly. For example, if we give users discussing a specific disease an opportunity to share their insights with researchers working in that disease area, we will explain in advance how we propose to share the information, and users could choose whether or not to share in that manner.
- We will use your contact information to communicate with you about your account or our services.
- We will share some information with third parties (such as a technology vendor) in the course of running our business, subject to strict contract controls over how they protect, use, and disclose the information.
Statistical, anonymous information.
We will create statistical, anonymous information about our users or web usage that is aggregated (grouped) and/or de-identified.
This statistical, anonymous information does not identify you or any other specific individuals.
- A federal medical privacy law named HIPAA (the “Health Insurance Portability and Accountability Act”) creates a standard for what it means to de-identify health data. Although we are not subject to that law, we meet or exceed the HIPAA de-identification standard when we create statistical, anonymous information about our users.
- We may disclose or sell such statistical, anonymous information to third parties, such as medical centers or pharmaceutical companies that we partner with. Please see How We Make Money for more information.
Uses and Disclosures We Would Make Only With Your Consent
- We will share your personally identifiable information with third parties or on the public portion of our website only as you specifically direct. We will clearly explain any such sharing opportunities to you in advance.
- We will not use or disclose any of your personally identifiable information for marketing purposes, unless you specifically and explicitly consent. You also could withdraw your consent for future sharing at any time.
Unusual Disclosures We Might Make Without Your Consent
- We will disclose information based upon a reasonable belief that the disclosures are required by law, including information requested via subpoenas and court orders.
- We may report what appears to be illegal or fraudulent conduct to law enforcement authorities.
- We may disclose information if we reasonably believe the disclosure is needed to respond to a threat of physical harm or to defend or assert legal rights.
We will only disclose personally identifiable information about you in the ways we explain here.
Access to Your Information
You can view the information you have submitted into your active Smart Patients account at any time. If you submitted information to us in any way other than through the website, we will make commercially reasonable efforts to give you access to your information upon request.
Deletion of Your Information
If you delete information from your Smart Patients account, it becomes immediately inaccessible by you and cannot be viewed by any other user on the Smart Patients website. Similarly, if you close your account, all of your information will become immediately inaccessible by you. For a limited time after data deletion or account termination, backup systems at Smart Patients may still contain the data, although reconstructing it in an identifiable format might not be possible or feasible.
Information you have shared through Community Discussion is inherently different from information in your private account. Information in Community Discussion is generally visible immediately to all users in that community, and it may remain in their possession even if later you would prefer to delete it. As a general matter, when users close their accounts, we do not remove the information they previously posted to the Community Discussion from our website and archives. However, if you ever submitted to us a specific request to remove information you had previously shared with a Community Discussion, we would make commercially reasonable efforts to remove it.
Of course, if you have already shared information through Smart Patients with third parties that have already saved it, the information will persist in their records. We do not have access to or control over anything you choose to share with third parties.
We are committed to maintaining the security of personal information. We use appropriate technical, administrative, and physical controls to protect personal information from loss, misuse, or alteration. If we share personal information with vendors, we subject them to strict contractual and legal controls regarding the protection, use, and disclosure of the information. If we share anonymous or de-identified data with third parties, we will contractually require them to keep it in de-identified form and forbid them to make any attempt to re-identify the data or allow others to do so.
There is always some risk that unauthorized, wrongful, or illegal access to your information could occur or that data sent over the Internet could be intercepted. We urge you to take strong precautions to protect your password.
How You Can Help Protect Your Privacy
Through Smart Patients, you can share information in online communities to learn from others and help others. The potential benefits of people sharing information with each other are tremendous. However, it is still important to take thoughtful steps to protect your own privacy and the privacy of other users. We encourage you to take these steps:
- Choose your username with care. Don’t use your name, email address, or anything linkable to your name unless you want everything you post, and others post about you, to be identified with you.
- Protect your password.
- Don’t upload your picture unless you are certain you want it to be shared.
- Consider the possibility that specific information you share may make it possible for others to guess your identity.
- Be aware that although our Terms of Agreement require users to respect the confidentiality of posts by other users within their community groups, it is possible that users might violate the Terms and disclose your information outside the Smart Patients website. Please keep that in mind as you decide what information to post.
- If you post information about someone else, you must have that person’s prior permission, as explained in our Terms of Agreement.
We will not post advertising on the Smart Patients website. A user who attempts to post advertising on the website is violating our Terms of Agreement and is subject to sanctions under the Terms of Agreement.
At this time, children under the age of 18 cannot create Smart Patients accounts. Parents may share information about their own children in accordance with the Terms of Agreement.
Business and Professional Users