Privacy Policy
Effective August 7, 2007
PatientsLikeMe realizes that our website, www.patientslikeme.com (the “Site”), can only work if we build trust with our patient communities. This policy outlines the type of information PatientsLikeMe collects from our members and how it is shared with other parties. We reserve the right to modify this policy at any time, and without prior notice, by posting amended terms on this website. We encourage you to review this policy periodically for any updates.
WHAT KIND OF DATA WE COLLECT AND WHY
PatientsLikeMe enables patients to track and share their disease history online so that the collective knowledge of thousands of patients can be shared with others affected by the disease. We know our success in achieving this goal depends on our member’s shared belief in our Openness Philosophy.
The type of data members may add to their profiles ("Profile Data") may include:
- Condition/disease information, including diagnosis date, first symptom information, and family history
- Treatment regimens, including treatment start dates, stop dates, and dosages
- Symptoms experienced, including severity and duration
- Primary and secondary outcome scores (e.g. ALSFRS-R, MSFRS, PDFRS, FVC, or weight) over time
- Biographical information, including photo, bio, gender, age, location (city, state & country), and general notes
Members may voluntarily enter information that identifies them ("Personally Identifiable Information") into their Profile Data or elsewhere on the Site. You may enter as much or as little of such information as you like. In the course of registering to use the Site, PatientsLikeMe may also ask you to provide certain information about yourself not in your Profile Data, such as your name, address, email, and birth date.
We may also periodically ask you to complete short surveys. You are free to respond or not. Your participation in these surveys is not required, and your refusal to do so will not impact your experience on the site. To create the best possible tools, research, and functionality for patients, we may also review your Personally Identifiable Information internally as needed.
Cookies are required to use the PatientsLikeMe service. A cookie is a small data file, which often includes an anonymous unique identifier that is sent to your browser from a web site's computers and stored on your computer's hard drive. PatientsLikeMe uses two types of cookies: Session Cookies, and Persistent Cookies. Session Cookies are temporary cookies that remain in the cookie file of your browser until you leave the Website. Session cookies do no store any personally identifying information, only a unique visitor ID number that we can use to customize the PatientsLikeMe functionality for you. Persistent Cookies remain in the cookie file of your browser for much longer, even after you leave the PatientsLikeMe website. Persistent cookies do no store any personally identifying information, only preferences that should persist from visit to visit, like "Remember Me".
HOW YOUR PERSONALLY IDENTIFIABLE DATA IS USED
So others can learn from your experience, your Profile Data will be aggregated and made available to other members. For example, we may report the number of patients trying a particular treatment or the number of patients experiencing a particular symptom. Additionally, other members will be able to view your Profile Data.
In addition to serving the individual needs of our members, PatientsLikeMe sponsors on-going research studies. By filling out your Profile Data you are adding your health information to our database which may be used in research. For example, we may look at scientific questions such as, "Do certain treatments work better for some types of people versus others?" At PatientsLikeMe and in conjunction with external researchers, we’re interested in better understanding the experience of living with chronic conditions and improving treatment options and health outcomes for everyone.
PatientsLikeMe will never rent, sell or share information that personally identifies you for marketing purposes. We do, however, provide Personally Identifiable Information and non-Personally-Identifiable Information to approved vendors for PatientsLikeMe email communications and other PatientsLikeMe internal programs.
In the future, we may provide an opt-in service to allow our partners (including but not limited to pharmaceutical companies, medical devices companies, non-profits, and research institutions) to directly and anonymously communicate with you through our system. Furthermore, we may provide our partners with anonymized data (which may or may not be aggregated) for research and commercial purposes.
PRIVACY SETTINGS
PatientsLikeMe offers two privacy levels you may choose for your participation:
- Visible: PatientsLikeMe registered members can see my Profile Data and user name, and can contact me through PatientsLikeMe.
- Public: Non-PatientsLikeMe members will be able to view my Profile Data and PatientsLikeMe registered members can contact me through PatientsLikeMe.
You may change your privacy level at any time, however, public profiles may be indexed by Internet search engines (e.g. Google). Regardless of which level you choose, Personally Identifiable Information not contained in your Profile Data such as full name & birthday will not be revealed to others without your consent (for example the PatientsLikeMe ALS Public Registry).
The PatientsLikeMe ALS Public Registry allows patient members of our ALS (Lou Gehrig’s Disease) community to opt-in to having their name and some Profile Data be part of a public registry which can be viewed by anyone on the Internet.
Because the value of PatientsLikeMe is in sharing your experiences to help others, we hope that you feel comfortable enough to make your profile as visible as possible.
OTHER SECURITY ISSUES
PatientsLikeMe cannot guarantee the identity of any other members with whom you may interact in the course of using the Site or who may have access (based on the privacy level you have selected) to information you have posted in the Member Area. Additionally, we cannot guarantee the authenticity of any data that members may provide about themselves.
Finally, you should know that PatientsLikeMe takes commercially reasonable technical precautions to help keep your data secure.
RISKS AND BENEFITS
While our goal is to help patients improve health outcomes, there are no certain benefits to using this website. However, keeping track of personal well-being, treatments and symptoms has been shown to be helpful in improving overall health.
There are also no known risks to using this website, but there is a possibility that users may feel uncomfortable sharing information online. You are free to stop using this service at any time. You are also free to skip any questions or data fields that make you feel uncomfortable.
QUESTIONS ABOUT THE PRIVACY POLICY
If you have questions or comments about our privacy policy, please let us know, or contact us at:
PatientsLikeMe Inc.
Attn: Privacy Issues
222 Third Street, Suite 0234
Cambridge, MA 02142
History of Updates/Changes to Terms and Conditions of Use:
- On August 7, 2007 this Privacy Policy was substantially revised and expanded to include additional patient consent language.
- On March 26, 2007, this Privacy Policy was substantially revised.
- On April 10, 2006, the following clauses were added: “We will provide our partners with anonymized, aggregated community data with the goal of increasing involvement in disease research” and “except in incidents when you have given explicit permission, e.g. in the ALS Registry.”