Frequently asked questions about study participation and data management
What Happens To My Data?
By using the application as part of your standard clinical care:
Your treatment team (ie. doctor, therapist, clinic administrators) will see your identifiable mental health data (ie. your name and other information that can identify you). This is part of standard Early Psychosis care.
Your treatment team can export your identifiable mental health data from the application. They may do this to support your treatment or provide required reports to groups that oversee and fund your clinic (e.g., county mental health department, private insurance). Your treatment team is responsible to protect your data once it is exported from the application. This is described by HIPAA guidelines and your clinic treatment agreement.
The UC Davis staff who manage Beehive will have access to my de-identified mental health data in order to support application development and management.
They will not see my name or any other information that could directly identify me. They will see my zip code and month/year of birth. All of my data will be linked to a unique identification number (ID). My unique ID will not contain any information that could identify me. My unique ID will not be connected to my name.
This data will only be used as part of Beehive management. For example: to provide technical support to me and my clinic, and/or improve Beehive.
You may also choose to share your data outside of your Early Psychosis Clinic as part of research efforts to improve Early Psychosis care for others in California and across the United States. You can change these permissions at any time. You can also ask researchers to delete your data.
You can share your data with the UC Davis Research Team
The UC Davis research team will not see your name or any other information that could directly identify you. They will see your zip code and month/year of birth. All of your data will be linked to a unique identification number (ID). Your unique ID will not contain any information that could identify you. Your unique ID will not be connected to your name.
The UC Davis research team will report group level data to organizations that fund the research, such as the National Institutes of Health (NIH). This data will also be presented at academic conferences and published in academic journals.
If you ask UC Davis researchers to delete your data, it will be removed from the research data set. Your data will no longer be included in future reports or research papers. It will not be removed from reports and research papers that have already been published.
You can also share your data with other researchers to access through the National Institutes of Health (NIH) EPINET National Data Coordinating Center (ENDCC)
Your name or any other information that could directly identify you will not be a part of this data set. Your zip code and month/year of birth will be a part of this data set. All of your data will be linked to a unique identification (ID) number. Your unique ID will not contain any information that could identify you. Your unique ID will not be connected to your name.
Other researchers can use this data in scientific research.
If you want your data to be deleted from the national database, you will need submit a request to the UC Davis research team (contact information below). Your data will be removed from the national database. Your data will no longer be shared with future researchers for use in scientific research. However, if NIH has already shared this data with other researchers, your data will not be deleted from those data sets.
How do I request the deletion of my data?
Whether you are an active client or former client in an Early Psychosis program that is part of the Learning Health Care Network, please contact our research team to request the deletion of your data.