Privacy Policy

The Open Research Exchange (“ORE”) Platform is provided by PatientsLikeMe, Inc. (“PatientsLikeMe”, “we”, “us” or “our”). By accessing or using the ORE Platform, you consent to the collection and use of information about you, including your name, your organizational affiliation and your email address (your “Personal Information”) as described in this Privacy Policy. If you are unwilling to consent to our collection and use of your Personal Information as described in this Policy, and to accept the terms in the ORE Platform Agreement (the “User Agreement”), you should not access or use the ORE Platform.

Collection and use of personal information

We collect Personal Information from you at the time you register to participate at the ORE Platform, when you submit information when registering to use or using the ORE Platform, when you create, import, or edit patient-reported outcome questionnaires (“PRO”), and when you otherwise interact with PatientsLikeMe online and offline. We use your Personal Information to contact you about the ORE Platform’s features, about the PROs you interact with, and about your other interactions relating to the ORE Platform. We also use and disclose your Personal Information as set forth below.

As described in the User Agreement, the ORE Platform will allow you to upload responses to PROs from subjects from whom you have collected such information (“Researcher Submitted Responses” as defined in the User Agreement). The treatment by us of any information contained in the Researcher Submitted Responses (which might include personally identifiable information about yourself if you upload a response that you yourself have filled out) is governed by the User Agreement and not by this Privacy Policy.

Information we collect or store as you access and use the ORE platform

In addition to any Personal Information or other information that you choose to submit to us via our ORE Platform, we and our third-party service providers may use a variety of technologies that automatically (or passively) store or collect certain information whenever you visit or interact with the ORE Platform (“Usage Information”). This Usage Information may be stored or accessed using a variety of technologies that may be downloaded to your personal computer, laptop, tablet or mobile phone (a “Device”) whenever you visit or interact with our ORE Platform. Usage Information may be nonidentifying or may be associated with you.

This usage Information may include:

  • your IP address or other unique identifier (“Device Identifier”). A Device Identifier is a number that is automatically assigned to your Device used to access the ORE Platform, and our computers identify your Device by its Device Identifier;
  • your Device functionality (including browser, operating system, hardware, mobile network information);
  • the URL that referred you to our ORE Platform;
  • the areas within the ORE Platform that you visit and your activities there, including remembering you and your preferences;
  • your Device location;
  • your Device characteristics; and
  • certain other Device data, including the time of day, among other information.

To collect Usage Information, we may utilize a variety of technologies, such as cookies (a small data file placed on your computer when you visit the Site), web beacons (small graphic images or other web programming code that may be included in our Site pages), and embedded scripts (code that is designed to collect information about your interactions with the Site, such as which links you click on) (“Tracking Technologies”). Some mobile service providers may also provide us and/or our third-party service providers with information regarding the device identifier and/or physical location of the device used to access the Site. Tracking Technologies may set, change, alter or modify settings or configurations on your Device.

Usage Information is usually anonymous information, since it is not normally associated with you or your identity. If Usage Information is combined with Personal Information in a manner that it is directly associated with your identity, then it will be treated as Personal Information under this Privacy Policy.

There may be other Tracking Technologies now and later devised and used by us in connection with the ORE Platform. Further, third parties may use Tracking Technologies with our ORE Platform. We may not control those Tracking Technologies and we are not responsible for them. However, you consent to potentially encountering third party Tracking Technologies in connection with use of the ORE Platform and accept that our statements under this Privacy Policy do not apply to the Tracking Technologies or practices of such third parties.

Use & disclosure of personal information

Except as indicated within this Policy, we will not sell, rent or transfer your Personal Information to or otherwise share your Personal Information with third parties. We may publicize and use your name and organizational affiliation as we see fit and via any means or medium we choose, including for purposes of publicizing the ORE Platform or our services or for publicly referring to you, your PRO or your research. We may share or transfer your Personal Information as directed to do so by you. We may otherwise share Personal Information or Usage Information with third party vendors who act for us for further processing in accordance with the purposes for which the information was originally collected, or for purposes to which you have subsequently consented. For example, sometimes a third party vendor may have access to your Personal Information or Usage Information in order to support our information technology or to help obtain, compile and manage the information for us.

We also may use your Personal Information or Usage Information that is subject to this Privacy Policy: (1) to support your PRO or provide you with information that you have requested or agreed to receive; (2) to process your registration with the ORE Platform, including verifying that your information is current and accurate; (3) to better understand how you are using the ORE Platform and improve the ORE Platform or our services, to provide technical support to you, to customize your experience on the ORE Platform, or to serve you specific content that is relevant to you; (4) to contact you with regard to your use of the ORE Platform and, in our discretion, about changes to the ORE Platform and/or the ORE Platform’s policies; (5) for internal organizational purposes; and (6) for purposes disclosed at the time you provide your Personal Information, or as otherwise set forth in this Privacy Policy.

We may access, use, preserve, transfer or disclose your information (including Device Identifiers and Personal Information), including disclosure to third parties: (i) to satisfy any applicable law, regulation, subpoenas, governmental requests or legal process if in our good faith opinion such is required or permitted by law; (ii) to enforce the ORE Platform Agreement or other agreements or policies applicable to the ORE Platform, including investigation of potential violations thereof; (iii) to protect the safety, rights, property or security of the ORE Platform or any third party; and/or (iv) to detect, prevent or otherwise address fraud, security or technical issues.

Business transitions

In the event that PatientsLikeMe goes through a business transition, such as a merger, acquisition by another entity, or transfer of all or a portion of its assets, your Personal Information or Usage Information might be among the assets transferred. You will not be notified in advance of any such change in ownership or control of your Personal Information.

Links to other websites

You should know that while visiting the ORE Platform, you can be directed, through links, to websites that are beyond our control. We are not responsible for the privacy practices and policies of such linked website.

Maintenance of Accurate Information

We have established procedures to correct inaccurate information in a timely manner. If you have any reason to believe that Personal Information about you that is stored and maintained by us is incorrect, please contact us by email at:

Protection of personal information

We strive to maintain the reliability, accuracy, completeness and currency of your Personal Information in our databases and to protect the privacy and security of our databases and the information we collect. Any Personal Information that you provide to us will be stored on our computer network servers. We maintain reasonable physical, electronic and procedural safeguards to protect the confidentiality of your Personal Information. The security measures in place for the ORE Platform, our databases containing your Personal Information and their servers aim to protect the loss, misuse or alteration of the information you provide to us. If you have any questions or concerns regarding the security of your information, please email us at

Changes in Privacy Policy

We reserve the right to change this Policy at any time, so you should review it each time you access the ORE Platform. If we change this Policy, we will post a link to the revised Policy at the ORE Platform.

Transfer of personal information to the united states

Our ORE Platform is operated in the United States and intended for users located in the United States. If you are located outside of the United States, please be aware that information we collect, including Personal Information, will be transferred to, and processed, stored and used in the United States. The data protection laws in the United States may differ from those of the country in which you are located, and your Personal Information may be subject to access requests from governments, courts, or law enforcement in the United States according to laws of the United States. By using the ORE Platform or providing us with any information, you consent to the transfer to, and processing, usage, sharing and storage of your information, including Personal Information, in the United States as set forth in this Privacy Policy.

Contact us

If you have any questions or suggestions regarding this Policy, please contact us at:

PatientsLikeMe Inc.
Chief Privacy Officer
160 Second Street
Cambridge, MA 02142
telephone: 617-499-4003

Effective date

This Privacy Policy is effective as of April 8, 2013.