Introduction

 

Welcome to HealthTree®, a tool created by Myeloma Crowd, a division of the CrowdCare Foundation ("Company" or "we"). HealthTree is a data platform for cancer patients, researchers and clinical practitioners to help advance cures.

 

This Privacy Policy (“Policy”) describes the types of information we may collect from you or that you may provide when you visit https://www.healthtree.org/ (the "Platform") and our practices for collecting, using, maintaining, protecting and disclosing that information.

 

This Policy applies to information we collect through the Platform, and through e-mail, text and other electronic messages between you and the Platform, as applicable. The Policy does not apply to information collected by us offline or through any other means, including on any other website operated by Company or any third party, including through any application or content (including advertising) that may link to or be accessible from the Platform.

 

Please read this Policy carefully to understand our practices regarding your information. By accessing or using the Platform, you agree to this Privacy Policy and our Terms of Use, incorporated herein by reference. If you do not want to agree to this Privacy Policy or the Terms of Use, you must not access or use the Platform. This Policy may change from time to time. Your continued use of the Platform after we make changes is deemed to be acceptance of those changes, so please check the Policy periodically for updates.

 


 

Purpose of This Privacy Policy

 

The purpose of this Policy is to explain how we collect and use information about you through the Platform, including personally identifiable information that you provide to us, such as your name, demographics, age, email address, phone number, birthdate, fitness level, and information about your medical history, health conditions, and prior treatments (“Personal Information”). We want you to know how your Personal Information will be protected, under what circumstances we may share it with third parties, and for what purposes.

 


 

Why We Collect Your Personal Information

 

HealthTree provides information about potential treatment options, which requires the collection of Personal Information in order to process and display personally relevant treatment possibilities and other information tailored to your needs, such as collective reports (e.g., time to progression based on treatment, fitness level impact on overall outcomes, etc.).  

 


 

Consent to Collect Your Personal Information

 

We request your consent to collect your Personal Information when you register to use the Platform. In doing so, we also explain what information will be collected and how we plan to use your Personal Information. We also offer you the option of revoking your consent ("opting out" or "unsubscribing") if you later decide that you no longer want to use the Platform or receive additional information from us. If we wish to use this information for purposes incompatible with the purposes for which the data was initially collected, we will offer an effective way to opt out of the secondary use.

 


 

Personal Information We Collect From You

 

You must register to use HealthTree and create a profile that includes your Personal Information. We collect information about you relating to your care and treatment directly from you as well as from third parties, for example, from your health care providers.  We limit the collection and processing of Personal Information to what is reasonable to fulfill the purposes for which it is to be used. You may be invited to participate in surveys facilitated by the Company or third parties, and we receive survey response information. We may collect and publish profile information and postings on the Platform to permit users to share information with each other and with other partners.  We may also collect information you share with our support team.

 


 

Collection of Anonymous Computer Information

 

We collect non-personal information such as website usage, traffic patterns, site performance, and related statistics regarding your visits to the Platform using “cookies,” which are small files placed on the hard drive of your computer through your web browser. Cookies are not associated with your personal identity. We use cookies to track users’ paths through the Platform during a visit to help us understand how people use the Platform and to recognize a repeat visitor to the Platform, enabling us to offer the user a set of services or information requested in a previous visit. You may refuse to accept browser cookies by activating the appropriate setting on your browser. However, if you select this setting you may be unable to access certain parts of the Platform. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies when you direct your browser to the Platform.

 


 

Third Party Services and Personal Devices

 

The Company may provide network integration with third party services and devices which can integrate health-related information or provide additional patient or caregiver services (such as Apple Health, Google Fit, genetic testing companies, bio-banks, etc.). If you choose to participate in the third party services, we may request your permission to access the data collected by the third party services.

 


 HealthTree Connect's Use of Apple Health Data

 

HealthTree has created the HealthTree Connect App. HealthTree Connect is a seperate and distinct application from www.healthtree.org.  HealthTree Connect's purpose is to automate the manual process of entering your lab results into www.healthree.org and to show your treatment and clinical trial options.  HealthTree Connect will not display any information within the app itself that is taken from Apple Health, this information can only be found in www.healthtree.org where you can edit or delete your information at anytime.

 

If you choose to connect Apple Health with HealthTree:

 

  1. HealthTree will use the information to show your most up to date treatment options available for you.
  2. HealthTree will use the information to show your most up to date clinical trials available for you.
  3. You can provide consent in HealthTree for your specialist or physician to view your HealthTree profile which may include information received from Apple Health. You must grant individual permission to each specialist or physician listed in your profile.  You have the ability to add or remove a specialist’s or physician’s access to your HealthTree profile at any time.
  4. And you grant your specialist or physician access, they will be able to see your health information from all the hospitals you go to for treatment. This gives them a better overall picture of your current status.
  5. You will also be able to view your own information and track your disease over time from multiple institutions all in one place.
  6. You agree to this privacy policy that states this data can be de-identified and shared with researchers to help accelerate a cure. Researchers will have access to reports that have had all personal health information (PHI) removed.  They will only see things like age, gender, treatments, side effects and outcomes.

 


 

How We Use Your Information

We may use and disclose your Personal Information for the following purposes:

  • We may use and disclose information you have entered to communicate with you by email or phone for account management purposes, notifications and reminders, systems maintenance and other purposes.

  • We analyze the information we collect to improve patient care. We may share de-identified data to perform research and produce reports for you as a patient and for the research community.

  • Your de-identified data may be shared with other users or with service providers such as hosting and data analytics companies or third-party vendors.

  • Your data may be shared to comply with legal obligations, law enforcement requests, legal directives such as a court order or subpoena, or to protect your, our or others’ rights, property, or safety.

  • When you participate in surveys that we or our partners facilitate, your profile information may be shared with your survey responses. Participation in such surveys is optional.

  • If we are involved in a merger, acquisition, financing due diligence, reorganization, bankruptcy, receivership, sale of assets, or transition of service to another provider, your Personal Information may be disclosed in connection with the negotiation of such transaction, and/or sold or transferred as part of such a transaction as permitted by law and/or contract. You will be notified by email twice prior to any ownership or transition of service changes. At that time you can request to have your entire HealthTree profile which includes your account information and all of your data permanently deleted.

 

We do not contract with insurance companies or provide insurance companies access to your Personal Information. However, we cannot guarantee that insurance companies will not be able to access the de-identified information publicly available on HealthTree’s website.  

We will not disclose your Personal Information to the general public. We do not host advertising on our site and will not sell your Personal Information for third-party marketing purposes.

 


 

Access to Information

You may access and update the information you post to HealthTree using your user profile dashboard. You may remove any information you have added to your HealthTree user profile at any time.

When you correct or amend information through HealthTree, such action may not affect the information that other users have already obtained through the Platform. For example, if a researcher began using your de-identified information for a research project prior to when you changed such information, the researcher may continue to use the information previously obtained.

You may permit us to obtain your health information directly from an online patient portal provided to you by your healthcare provider by signing a consent form. We will extract data from health records available through such portal and post it to your user profile on the Platform. If you would like to correct or update such information, or revoke your consent, please contact us at [email protected].

At any time, you may revoke your consent to this Policy and our Terms of Use and stop using the Platform. Please contact us at [email protected] to have your user profile removed from our system.

 


 

How We Protect Your Information

 

You agree that the information you provide to us through the Platform is accurate and that you will keep it up-to-date. When you register for a user profile on the Platform, you will be asked to provide a password. You are solely responsible for maintaining the confidentiality of your user profile and password, and you accept responsibility for all activities that occur under your user profile. If you believe that your user profile is no longer secure, you must immediately notify us at [email protected].

 

Company is not a “covered entity” under the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”), and therefore is not required by law to comply with HIPAA’s requirements for handling protected health information. Company has a security program in place that seeks to mitigate risk and to use reasonable and appropriate procedures and technologies to help protect the confidentiality of Personal Information collected through the Platform. We periodically review and modify our security policies and procedures, as appropriate.

Please note that despite our precautions, no website can be absolutely protected against intentional or malicious intrusion. Furthermore, Company does not control the devices, computers, or network over which you may choose to send Personal Information to the Platform, and therefore cannot prevent potential interceptions or compromises to your information while in transit to the Platform. Company has implemented measures designed to safeguard your Personal Information, but cannot make any guarantees as to the security, integrity, or confidentiality of electronic communications made over the Internet or any information transmitted to or from or maintained on the Platform.

 


 

Applicable to California Residents

 

California Civil Code Section § 1798.83 permits users of the Platform that are California residents to request certain information regarding the disclosure of Personal Information to third parties for their direct marketing purposes. To make such a request, please contact us at [email protected].

 


 

International Users

 

Company operates solely in the United States, and the Platform is intended to be used by persons residing in the United States. If you are a person residing outside of the United States, by accessing and using the Platform you consent to the transfer of your information to the United States and the processing of your information in the United States.

 


 

Platform Not Intended For Use By Children Under 18 Years of Age

 

We do not knowingly collect Personal Information from children under 18 years of age. If you are under 18, do not use or provide any information on or through the Platform or any of its features, or provide any information about yourself to us, including your name, address, telephone number, e-mail address or any screen name or user name you may use. If we learn that we have collected or received Personal Information from a child under 18 without verification of parental consent, we will delete such information. If you believe we may have any information from or about a child under 18, please contact us at [email protected].

 


 

Updates to Privacy Policy

 

This Privacy Policy became effective on January 1, 2018. We may update this Policy from time to time. We encourage you to review our Privacy Policy periodically. If you have questions regarding this Privacy Policy, please contact us at [email protected].


 

This Privacy Policy was last updated on May 29, 2018.