Privacy Policy


Privacy Policy

Updated Q4 2017
healtheo360 ( (“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, wellness, and treatments. 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 healtheo360 collects from individuals who have registered to join healtheo360 (“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 follow the best practices in security (as per HIPAA Security Compliance). We use a respected, secure hosting provider for the site, which has signed a HIPAA compliance agreement and earned SAS Type II certification. We also use state of the art firewalls for our production servers, and our systems have been developed to prevent the most common security vulnerabilities. For secure browsing, we use 128-bit SSL encryption using Verisign certificates. Finally, when we do any testing and development work to the site, we use sanitized versions of the site, with all personally identification information stripped out.
We may use the personal information you give us to send you information about health products and other Services, as well as material on behalf of third parties with whom we have a business relationship. By third parties we mean, for example, entities such as health associations and advertisers that link to our Site or that make use of our Service. The information we send you may, on occasion, contain advertising or requests either from us or from a third party on whose behalf we would send the information. For example, we may contact you to see whether you are interested in being considered for an upcoming clinical trial that is being sponsored by a pharmaceutical company.
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.



Shared Data

Some of the information that Members provide about themselves may be shared with the healtheo360 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;

  • Laboratory results, e.g. CD-4 count, viral load, creatinine;

  • 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. group member.

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;

  • 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 healtheo360, that Personal Information is treated as Restricted Data.


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.


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:
  • healtheo360 uses both Shared Data and Restricted Data internally, as needed, for research, for maintenance and operation of the Site, and to create the best possible tools and functionality for patients and caregivers.

  • healtheo360 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.

  • healtheo360 may share or disclose a Member’s data where required by law or to comply with legal process.

  • In the event healtheo360 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.

How Shared Data is Used by Healtheo360

Shared Data is viewable via My Profile and through aggregated reports that are made available to other healtheo360 Members. In some instances, this Shared Data is also viewable to those not registered to join healtheo360 (“Non-members”). We report publicly Shared Data in aggregate, such as the number of patients on a particular treatment or the number of patients experiencing a particular symptom. If a Member chooses to designate My Profile as “Public” (see Privacy Settings below), their Shared Data can also be viewed by Non-members and linked with aggregated reports.
healtheo360 may also periodically ask Members to complete short surveys about their experiences (including questions about products and services). Survey responses are analyzed, combined with Members’ Shared Data and shared with and/or sold to Partners. Member participation in these surveys is not required, and refusal to do so will not impact a Member’s experience on the Site.
Survey Information. From time to time, we may post a survey on the Service, if we have your contact information and your consent, we may send you a questionnaire or survey. Your participation in any survey is always voluntary. We compile statistical information from the responses to our surveys. These statistics do not identify you personally. These statistics help us understand the needs and preferences of the groups we serve and improve the content and functionality of the Site as well as Individual Sites.
healtheo360 may also report individual adverse event and drug safety information to the FDA, CDC, and/or other regulatory bodies (U.S. and international) as well as directly to pharmaceutical and biotechnology companies. healtheo360 does not provide Restricted Data to such regulatory bodies, although we reserve the right to contact Members for follow-up at the request of agencies or Partners. The information healtheo360 reports includes, but is not limited to, all of the information about the Member and/or free text or images on the forums or evaluations, which may include Shared Data. In addition, certain 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 community, and healtheo360 assists such Partners with reporting adverse events to regulatory agencies.
healtheo360, like most Internet communities, is a public forum, and Members acknowledge and accept that any information shared through free text or images might be connected to Members’ Shared Data (which may be shared with, sold to, or displayed for others). For example, if a Member puts his or her name (or other Personal Information) into a free text field like the biography, forum, journals or annotations, the Member should know this information may be included in what is shared with, displayed for, or sold to Partners.


While our goal is to help patients improve health outcomes, there are no certain benefits to using this website. 
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 a Member could be identified using information shared on healtheo360 (and/or in conjunction with other data sources). A Member could be discriminated against or experience repercussions as a result of the information shared. For example, it is possible that employers, insurance companies, or others may discriminate based on health information.
Members should understand that anyone can register at healtheo360 and view the Shared Data in the system. 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.
In using the Site, Members are free to skip any non-required questions or data fields that make them feel uncomfortable. Members are also free to stop using this service at any time. If a Member chooses to deactivate his/her account, healtheo360 will not display or sell the data in that account as of the date of deactivation. However, the Member’s data will remain in the system for auditing purposes, and research conducted prior to the deactivation of a Member’s account will still include the Member’s data.


If you have questions or comments about our Privacy Policy, contact us at:

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healtheo360 believes strongly in user privacy.