Privacy Policy

Privacy Policy and Data Security Measures

We at MyApnea.Org have taken many steps to protect your privacy. Health information is private under federal law. However, by joining MyApnea.Org and agreeing to our informed consent form you are giving permission for the following people and groups to see, use, and share your identifiable health information:

  • Any approved groups that help create MyApnea.Org, such as Partners research staff involved in this study
  • People or groups that we hire to do work for us, such as data storage companies, website designers, and lawyers
  • The Partners HealthCare ethics board that oversees the project and the Partners HealthCare research quality improvement programs
  • People from organizations that provide accreditation and oversight of hospitals and research
  • Federal and state agencies that oversee or review research, such as the Patient Centered Outcomes Network
  • If you consent to participate in other patient-powered research networks (PPRNs), your identifiable health information will be shared and linked ONLY with the PPRN(s) in which you have offered your consent

We will use your information for research.

We collect information about you, your health, and some of your behaviors. This information will be used in research and will be presented in scientific conferences and published in scientific journals. These presentations and publications will never show any information that identifies you or any other individual in the study. We will share summary information that does not contain any identifying information with other participants in the network, which include members of the National Patient Centered Outcomes Network and research partners in MyApnea.Org. While we think that there are only minimal risks associated with sharing research results, we cannot predict how this information might be used in the future. We take many safety measures to protect your privacy, but we cannot guarantee that your identity will never be known.

We will never sell, rent, or lease your information.

We will never voluntarily share identifying information about you without your permission.

You will be able to see some of your study information and summary information provided by other members in MyApnea.Org. When you register for MyApnea.Org you provide us with a username and a password. You can use this to sign into the study and see your Dashboard and some of the health information you've provided to us (e.g., your sleep surveys and health profile). Some of this information will be displayed in summary form and shown in relationship to summary information provided by other members of MyApnea.Org.

You should be very careful not to provide your login information to anyone else. If you are worried that someone else may be using your login information, please let us know immediately, or change your password yourself through the My Account Setting page.

We follow the Electronic Security and Adherence to the HIPAA Privacy Rule.

MyApnea.Org follows the security guidelines of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). All study data is sent, stored, and processed in a secure environment.

We are required by the Health Insurance Portability and Accountability Act (HIPAA) to protect the privacy of health information obtained for research. This is an abbreviated notice, and does not describe all details of this requirement - see Partners Privacy Notice.

During this study, identifiable information about you or your health will be collected and shared with the researchers conducting the research. In general, under federal law, identifiable health information is private. However, there are exceptions to this rule. In some cases, others may see your identifiable health information for purposes of research oversight, quality control, public health and safety, or law enforcement. We share your health information only when we must, and we ask anyone who receives it from us to protect your privacy.

We are protecting your data.

The Partners HealthCare Research IT Facilities Security Center will host the data for MyApnea.Org. All study information will be stored on secure network servers.

Data and the web portal will be housed on the Partners HealthCare Research Computing Cloud Infrastructure. The Discovery Information Platform for Research (DIPR) provides a set of virtual services within the Partners HealthCare secure data center and within the Partners HealthCare network. All systems are secured behind the Partners HealthCare firewall and follow Partners HealthCare Information Security policies for authenticated, minimum access. All systems are patched, monitored and scanned routinely for vulnerabilities and intrusions by the systems administrator and PHS Information Security. Data is encrypted, where applicable, in compliance with state and federal government standards, regulations, and in accordance with Partners Security and Privacy policies. The web server and database server are hosted within the Partners Firewall, and make use of standard 256-bit encryption connection ciphers.

MyApnea.Org may use cookies to indirectly collect information

MyApnea.Org may use cookies to enhance your experience while using the web application. A "cookie" is a small piece of data that is sent to your browser and is stored on your computer's hard drive. Cookies are used to collect non-identifying information about the user to make web-surfing easier by performing certain functions such as saving your passwords, your personal preferences regarding your use of the particular website and to make sure you do not see the same ad repeatedly. Many consider the use of cookies to be an industry standard. Your browser is probably set to accept cookies. If you prefer, you can disable cookies within your browser settings.

In addition to using cookies and related technologies as described above, we also may permit certain third party companies to help us tailor advertising that we think may be of interest to users and to collect and use other data about user activities on our site and/or services (e.g., to allow them to tailor ads on third party services).

If you have any questions about this information, please contact us by email at support@myapnea.org.