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Privacy

Privacy

Dr.Amp.com (“Site”) is a sharing web site. Our goal is to provide a platform for patients who want to share their health information to create collective knowledge about disease, health, and treatments. We know our success in achieving this goal depends on a shared belief in our Openness philosophy. Being open about one’s health is not for everyone, and we strive, with full transparency, to outline the benefits and risks of being part of this sharing site, including those related to privacy.
This Privacy Policy outlines the type of information PatientsLikeMe collects from individuals who have registered to join PatientsLikeMe (“Members”) and how it is shared with other third parties, including, but not limited to, pharmaceutical companies, medical device companies, non-profits, and research institutions (“Partners”).
We reserve the right to modify this policy at any time, and without prior notice, by posting an amended Privacy Policy and terms on this website. We encourage Members to review this policy periodically for any updates.
 

What kind of information we collect

Shared Data

Some of the information that Members provide about themselves may be shared with the PatientsLikeMe community, Partners, and others (“Shared Data”). Examples of Shared Data that Members may submit at the Site, including through their health profile (“My profile”), may include:

  • Biographical information, e.g. photograph, biography, gender, age, location (city, state and country), general notes;
  • 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. ALSFRS-R, MSRS, PDRS, FVC, PFRS, Mood Map, Quality of life, weight, InstantMe;
  • Sensor information, e.g. personal activity trackers;
  • Laboratory results and biomarkers, e.g. CD-4 count, viral load, creatinine, voice features, images;
  • 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 Site, e.g. invited care team member, mentors, feeds, subscriptions.

In the course of using the Site, Members may share information that could be used to reasonably identify them (“Personal Information”), including name, photograph, and email address. When a Member chooses to share Personal Information via a free text field (e.g. forum, treatment evaluations, annotations, journals, feeds and adverse event reports) and photos or images, the information shall be treated as Shared Data.

Restricted Data

Some of the information that Members enter into certain fields when registering to use or using the Site will not be shared (“Restricted Data”). The type of Restricted Data that Members may submit at the Site 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;
  • Mailing address, as collected via email, forms, or private message as part of Member programs such as t-shirt giveaways and PatientsLikeMeInMotion™;
  • Date of birth, as collected in My Profile; and
  • Private messages.

When a Member enters Personal Information, including name and email address, as part of registering to use PatientsLikeMe, that Personal Information is treated as Restricted Data.

Cookies

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 Site:

  • Session Cookies are temporary cookies that remain only until you log 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 site information.
  • Persistent Cookies remain in the cookie file of your browser for much longer, even after you leave the Site. 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 Site (“Site Usage”).
Cookies

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, other patients, 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.

There are instances where both Shared Data and Restricted Data, including Personal Information, may be used and disclosed including, but not limited to, the following:

  • dramp uses Shared Data, Restricted Data, and Site Usage internally, as needed, for research, for maintenance and operation of the Site, and to create the best possible tools and functionality for patients.
  • dramp may use a Member’s data in the case of an emergency or other circumstance that we determine requires a member of the management team to directly contact the Member.
  • dramp may share or disclose a Member’s data where required by law or to comply with legal process.
  • In the event PatientsLikeMe goes through a business transition, such as a merger, acquisition by another organization, or sale of all or a portion of its assets, the Shared Data and Restricted Data, including Personal Information, might be among the assets transferred. Members will be notified via this Site of any such change in ownership or control of Personal Information.