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 with the use of cannabinoids.
MyCompassion (www.mycompassion.org) (“Site”) is a nonprofit 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 with the use of cannabinoids. We know our success in achieving this goal depends on a shared belief in My Compassion's Mission and Vision. 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.
Information My Compassion Collects
Some of the information that Members provide about themselves may be shared with the My Compassion community, Partners, and others (“Shared Info”). Examples of Shared Info 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. Mood Map, Quality of Life, weight;
- 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 Info.
Some of the information that Members enter into certain fields when registering to use or using the Site will not be shared (“Restricted Info”). The type of Restricted Info 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 My Compassion Events;
- 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 MyCompassion, that Personal Information is treated as Restricted Info.
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”).
How your data is used
Members should expect that every piece of information they submit (even if it is not currently displayed), except for Restricted Info, 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 Info and Restricted Info, including Personal Information, may be used and disclosed including, but not limited to, the following:
- My Compassion uses Shared Info, Restricted Info, 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.
- My Compassion 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.
- My Compassion may share or disclose a Member’s data where required by law or to comply with legal process.
- In the event My Compassion 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 Info and Restricted Info, 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 Info is Used
Shared Info is viewable via My Profile and through aggregated reports that are made available to other My Compassion Members. In some instances, this Shared Info is also viewable to those not registered to join My Compassion (“Non-members”). We report publicly Shared Info 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 Info can also be viewed by Non-members and linked with aggregated reports.
In addition to serving the individual needs of our Members, My Compassion and its Partners are interested in better understanding the patient experience and improving treatment options and health outcomes for everyone. For example, we may look at questions such as, “Do certain treatments work better for some types of people versus others?” My Compassion provides Shared Info, in individual and collected format, to Partners and other third parties for use in scientific research and market research. When providing this information, My Compassion removes Members’ Restricted Info to reduce the likelihood of re-identification prior to sharing information with Partners.
My Compassion also provides a voluntary opt-in service to allow Partners to directly communicate with Members through our system.
My Compassion 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 Info and shared with and/or reviewed by Partners. Member participation in these surveys is not required, and refusal to do so will not impact a Member’s experience on the Site.
My Compassion 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. My Compassion does not provide Restricted Info to such regulatory bodies, although we reserve the right to contact Members for follow-up at the request of agencies or Partners. The information My Compassion 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 Info. 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 My Compassion assists such Partners with reporting adverse events to regulatory agencies.
My Compassion, 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 Info (which may be shared with, provided 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 provided to Partners.
How Restricted Info is Used
Restricted Info is not automatically shared with, sold to, or displayed for other Members or Partners. Specific instances where Restricted Info may be used include, but are not limited to, the following:
- If a Member provides a date of birth, the Member’s current age will be viewable via My Profile;
- If a Member registers with, or is switched to, an official doctor and research account, the Member’s full name and affiliation will be viewable via My Profile;
- If a Member chooses the Public privacy setting (see below), MyCompassion and others may use public profiles in reports, conference presentations, media mentions, etc.;
- If a Member agrees to participate in a media interview (as arranged by My Compassion), My Compassion will share the contact information the Member provides (i.e. name, email, telephone) with the reporter for the purpose of conducting an interview;
- If a Member OPTS IN to a public registry, My Compassion will display the Member’s name and some Shared Info and/or Restricted Info as part of this registry (which is viewable by anyone on the Internet);
- If a Member explicitly opts in to have their Restricted Info shared with a Partner, My Compassion will share the information as instructed by the Member (e.g. co-registration with a non-profit);
- If a Member makes a request, My Compassion may use Restricted Info, including sharing the Member’s Restricted Info with software/service vendors, for the purpose of fulfilling the request. Examples include requesting to receive the My Compassion newsletter via email, requesting an email response from the My Compassion support team, and requesting a My Compassion gift item be mailed to the Member’s residence.
There are two privacy levels a Member may choose for participation at My Compassion:
- Visible: Only My Compassion Members can see My Profile and user name, and can contact you through My Compassion;
- Public: Non-members and Members can see My Profile and user name, but only My Compassion Members can contact you through MyCompassion.
Members may change their privacy level at any time. Public profiles may be indexed or stored by Internet search engines (e.g. Google) or other independent sites, which means a Member’s Shared Info, including any Personal Information shared, may come up in the search results by anyone on the Internet, even after switching privacy levels.
Because the value of My Compassion is in sharing one’s experiences to help others, we hope that Members feel comfortable enough to make their profiles as public as possible.
Other security issues
My Compassion cannot guarantee the identity of any other Members with whom a Member may interact in the course of using the Site or who may have access to a Member’s Shared Info. Additionally, we cannot guarantee the authenticity of any data that Members may provide about themselves.
Finally, Members should know that My Compassion takes commercially reasonable technical precautions to help keep Member 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 a Member could be identified using information shared on My Compassion (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.
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, My Compassion 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.