Privacy Policy
Effective November 18, 2009
PatientsLikeMe realizes that our website, www.patientslikeme.com (the “Site”), can only work if we build trust within 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 privacy policy and terms on this website. We encourage you to review this policy periodically for any updates.
WHAT KIND OF INFORMATION WE COLLECT AND WHY
PatientsLikeMe enables patients to 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 members’ shared belief in our Openness Philosophy.
The type of data members may submit to PatientsLikeMe at the Site to share with the community and be included within 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, dosages, and side effects
- Symptoms experienced, including severity and duration
- Primary and secondary outcome scores (e.g. ALSFRS-R, MSFRS, PDFRS, FVC PFRS, Mood Map, Quality of Life, weight) over time
- Laboratory results (e.g. CD-4 count, Viral Load)
- Biographical information, including photo, bio, gender, age, location (city, state & country), and general notes
- Genetic information, including information on individual genes and/or entire genetic scans
In the course of using the Site, PatientsLikeMe may also prompt you to provide certain information about yourself including your name, email address, date of birth, mailing address, and password (“User Information”). PatientsLikeMe does not automatically include or display User Information in your shared Profile Data (except as indicated below). If you provide your date of birth, your profile will reflect your current age. Unlike patients and caregivers, members who are guests or health care professionals are asked to share their names as part of their shared Profile Data, and their names will be automatically displayed within the Site if provided as part of their User Information. Additionally, health care professionals must also enter their affiliation, which also will be displayed within the Site.
Patient members and their caregivers may enter as much or as little information as they like and should not enter any information they feel uncomfortable sharing. Members are encouraged to share health information but should consider that the more information that is entered, and the more personally identifiable the information is, the more likely it is that a member could be located or identified. Although patient members’ personally identifiable User Information is not displayed on their profile page, all PatientsLikeMe members can view the information in the profile, as well as other areas on the Site where members can share any information including health information and personally identifiable information through free text or images (e.g. photos, bios, forum postings, evaluations). PatientsLikeMe, like most Internet communities, is a public forum and you acknowledge and accept that any information you share is connected to the Profile Data above.
We may also periodically ask you to complete short surveys about your experiences (including questions about products and services) for research purposes and/or on behalf of third parties with which PatientsLikeMe works closely, including researchers, pharmaceutical and medical device companies, and insurance companies (“Partners”). 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.
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 log out of the website. Session Cookies do not 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 also do not store any personally identifiable information, only preferences that should persist from visit to visit, like "Remember Me".
HOW YOUR PERSONALLY IDENTIFIABLE INFORMATION IS USED
To create the best possible tools, research and functionality for patients, PatientsLikeMe may use your personally identifiable information internally as needed. PatientsLikeMe may use your personally identifiable information to fulfill any request you make or otherwise as directed by you (e.g. in the course of providing our service or for purposes of PatientsLikeMe's fulfilling requests for t-shirts, which requires a name and mailing address). When necessary, we may also provide your personally identifiable information to approved vendors for their use in assisting us with the maintenance and operation of the Site (e.g. customer service email software/service or email newsletter delivery software/service).
Other members, and sometimes Partners (pursuant to written agreements designed to limit the use and disclosure of your personally identifiable information), will be able to view your Profile Data. Additionally, so that others can learn from your experiences, your Profile Data will be aggregated and made available to other members and non-members. For example, we may report the number of patients trying a particular treatment or the number of patients experiencing a particular symptom. If you choose to designate your Profile Data as “Public” (see “Privacy Settings” below), non-members can also see your Profile Data.
PatientsLikeMe and its Partners are interested in better understanding the experience of living with chronic conditions and improving treatment options and health outcomes for everyone. In addition to serving the individual needs of our members, PatientsLikeMe provides information to Partners and other third parties, including for use in scientific research and market research. PatientsLikeMe removes pieces of personally identifiable information that can reasonably be used to identify you (i.e., “de-identifies” your data) prior to sharing information with third parties. PatientsLikeMe shares such de-identified data that relates to you, in some cases as part of individual records and in other cases in aggregate form, with third parties. For example, we may look at scientific questions such as, “Do certain treatments work better for some types of people versus others?”
PatientsLikeMe may report adverse event and drug safety information to the FDA, CDC, and/or other regulatory bodies (both US and internationally) as well as directly to pharmaceutical and biotechnology companies. We do not provide personally identifiable information including names, emails, or addresses, although PatientsLikeMe reserves the right to contact members for follow-up at the request of agencies or Partners. The information we report includes, but is not limited to, all of the information about the member and/or free text or images on the forums or evaluations. In addition, certain patient communities and areas within our Site are provided with the support of Partners. These Partners may have adverse event reporting requirements that relate to regulated products that are used by members of our communities, and PatientsLikeMe assists such Partners with reporting adverse events to regulatory agencies.
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 communicate with you through our system.
PRIVACY SETTINGS
PatientsLikeMe offers two privacy levels you may choose for your participation:
- Visible: PatientsLikeMe registered members can see your Profile Data and user name, and can contact you through PatientsLikeMe.
- Public: Non-PatientsLikeMe members will be able to view your Profile Data and PatientsLikeMe registered members can contact you through PatientsLikeMe.
You may change your privacy level at any time, however, public profiles may be indexed and cached by Internet search engines (e.g. Google). Regardless of which level you choose, personally identifiable User Information not contained in your Profile Data, such as full name or email, 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. It is possible that employers, insurance companies or others may discriminate based on health information. 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.
If you are reading this Privacy Policy because you have access to the personal information of a Site participant, we urge you to recognize and fulfill your responsibility to protect the privacy of that person.
QUESTIONS ABOUT THE PRIVACY POLICY
If you have questions or comments about our privacy policy, please let us know, or contact us at:
History of Updates/Changes to Terms and Conditions of Use:
- On November 18, 2009, this Privacy Policy was substantially revised to clarify language and provide specific examples to help illustrate the meaning of portions of the policy.
- 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.”