USING HUGO TO PARTICIPATE IN RESEARCH
Once you have collected your health information on Hugo’s secure platform, you can choose to share your data with researchers who are generating new knowledge and producing insights that have the potential to help millions of people. Hugo recognizes this potential and understands that many people want to get involved and share data to help with this vital work. This vision of collaboration between researchers and those participating in research is central to the Hugo mission.
Frequently Asked Questions
What is a research study?
A research study is an endeavor to answer a scientific question. Studies are conducted to find the best ways to treat illness. A research study that asks whether new treatments are safe and effective is called a clinical trial.
Why should I volunteer for a research study?
There are many reasons to volunteer for a research study. Your participation may help to find a cure for a disease, help others who are sick, or help improve care standards for entire populations. People who participate in research help society advance our collective understanding of health and disease.
What questions should I ask before I agree to take part in a research study?
It is always good to obtain information about a study before participating. You can expect a written explanation of why, where and by whom information will be used. If anything is unclear, you always have the right to ask for additional information.
What if I do not want to take part in a research study?
If asked to participate in a research study, you have a right to say “no”. If you do join a research study, you can decide to leave the study at any time.
What is an IRB?
The Institutional Review Board (IRB) is a group that reviews research conducted with humans. It includes medical professionals and scientists from the community. An IRB makes sure that your rights as a volunteer are well protected.
Who owns my data?
Who are Hugo's partners?
Hugo is a platform that provides opportunities for you to share your data to help advance research for new cures and to improve the health care system. Our partners are researchers who appreciate your generosity and respect your privacy when you choose to share your data. They are interested in being your partner as they pursue their research endeavors.
How is my health information kept private and secure?
Our technology follows stringent guidelines outlined by HIPAA and has been developed and tested by a team with deep experience in health information security and privacy. For more information, please visit our privacy center or read about Hugo’s security infrastructure.
Does Hugo share my health information?
What if I decide to leave Hugo?
You are free to leave Hugo at any time by notifying firstname.lastname@example.org. Information will be deleted from our system within 30 days and any active sharing will discontinue. Information that has already been shared with researchers will remain a part of the study. Additionally, you always have the ability to download your record and move your information elsewhere.
What if I have more questions?
If you have any questions regarding privacy, clinical trials, or security, the Hugo team wants to make sure that they’re answered. You can reach us at email@example.com