Thank you for using the YourDHS App, created in partnership with Trio Health.
To provide our services, we require your consent to collect and process your personal information. This Patient Consent Policy outlines the terms and conditions under which we collect, use, store, and disclose your personal information. By using our app, you acknowledge that you have read and understood this policy and agree to its terms.
Introduction
This mobile application is collecting HIPPA protected data from you. We would like to make your data available to your physician to help them manage your HAE, and for research studies that may be done in the future. The research may be for diseases or conditions similar to HAE, however, research could also be about unrelated diseases, conditions. These studies may be done by researchers at Trio Health or other institutions, including commercial entities.
Our goal is to help your doctor manage your HAE most effectively, and to help more people understand the real-world experience of an HAE patient. We plan to keep your data indefinitely, unless otherwise requested. See “Withdrawal of Consent from Storage and Sharing.”
Your data will be shared with your physician and may also shared, in a de-identified format, with HAE pharmaceutical manufacturers and researchers. However, the decision to share your data is controlled by Trio Health. To get your data, future researchers or manufacturers must seek approval from Trio Health. The researchers must agree not to try to identify you.
We will protect the confidentiality of your information to the extent possible. Your data will be coded to protect your identity before they are shared with manufacturers or researchers. Trio Health will have a code key that can be used to link to your identifying information. The code key will be securely stored.
Voluntary Participation and Withdrawal of Consent from Storage and Sharing
It is your choice whether or not you consent to Trio Health sharing your data for research in the future. If you say “yes,” you can change your mind later. If you say “no,” you’ll be unable to use this application.
If you change your mind and no longer wish to have us store or share your data, you should contact Kathy Heckman at Kathy.heckman@triohealth.com. We will do our best to honor your request and to retrieve any data that have been shared with other researchers. However, there may be times we cannot. For example, if we do not have a way to identify your data, we will not be able to retrieve them. In addition, if the data have already been used for new research, the information from that research may still be used.
Risks & Benefits
[Risks] We will do our best to protect your data during storage and when they are shared. However, there remains a possibility that someone could identify you. There is also the possibility that unauthorized people might access your data. In either case, we cannot reduce the risk to zero.
[Benefits] You will not receive any direct benefit from sharing your data, however, sharing your data may help your physician manage your HAE and could contribute to research that could help others in the future.
Commercial Application
The use of your data may lead to new tests, drugs, devices, or other products or services with commercial value. These products or services could be patented and licensed. There are no plans to provide any payment to you should this occur.
In summary, I understand that:
- Myself and/or my caregiver are the only people who should be using my account for this application and completing my daily check ins.
- I understand that I can only participate in this program with one Medical Provider at a time.
- The device/program is meant to collect clinical data and send it from my phone to a secure online website. It is NOT AN EMERGENCY RESPONSE UNIT AND IS NOT MONITORED 24/7. I will call 911 for immediate medical emergencies.
- I understand that my data will be electronically transmitted from the monitor to the App on my phone and then to Trio Health and Digital Healthcare Solution’s servers in a safe and secure manner.
- I will do my best to collect my data every day, or at least 16 days every month, as instructed.
- I understand that a Qualified Health Professional will review my readings periodically, and that this program is NOT a 24/7 Monitoring Service. I will be contacted every 30 days, by phone, to review and discuss my results and progress.
Changes to this Policy
We reserve the right to update or modify this Patient Consent Policy from time to time. Any changes will be effective immediately upon posting the revised policy on our app. We encourage you to review this policy periodically to stay informed about how we collect, use, and protect your information.