What is de-identified data? What is identified data?

• De-identified patient data is patient information that has had personally identifiable information (PII; e.g. a person’s name, email address, or social security number), including protected health information (PHI; e.g. medical history, test results, and insurance information) removed. This is normally performed when sharing the data from a registry or clinical study to prevent a participant from being directly or indirectly identified. (Source: NIH)

• Identified health data includes personally identifiable information (e.g. a person’s name, email address, or other identifying information). Typically this is only necessary to be shared to allow a researcher to contact you to join a study.

• Most researchers want access to de-identified data only. Your health system will ensure that only information beneficial to research is shared with approved researchers and that your privacy is appropriately maintained.

What is clinical research?

Clinical research is the study of health and illness in people. There are two main types of clinical research: observational studies and clinical trials. (source: NIH)

• Observational studies monitor people in normal settings. Researchers gather information from people and compare changes over time. For example, researchers may ask a group of older adults about their exercise habits and provide monthly memory tests for a year to learn how physical activity is associated with cognitive health. Observational studies do not test a medical intervention, such as a drug or device, but may help identify new treatments or prevention strategies to test in clinical trials.

• Clinical trials are research studies that test a medical, surgical, or behavioral intervention in people. These trials are the primary way that researchers determine if a new form of treatment or prevention, such as a new drug, diet, or medical device (for example, a pacemaker), is safe and effective in people. Often, a clinical trial is designed to learn if a new treatment is more effective or has less harmful side effects than existing treatments.

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The option to opt out of all communication from HealthEx is included as part of the Front Door on-boarding experience presented to users when they first start using the service. Users may get back to this preference screen by clicking on the “Update Preferences” link on their Settings page, and updating the preference to opt-out of being contacted by HealthEx.

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Every text message you receive from HealthEx will end with: “Reply STOP to opt-out”. If you include STOP in your response, we will no longer contact you via text message.

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