Who is accessing your data?
Although participants in mHealth studies agree to collect and share their data with the research team, they might not know when their data is shared with other researchers, institutions, or for secondary analysis. If participants have concerns or preferences for who uses their data, it can be extremely difficult, if not impossible, to withdraw their data if it has already been shared with another entity. Additionally, participants are not always informed about the study findings and research outcomes that their data helped produce.
For these reasons, participants can feel frustrated by the lack of transparency in when and how their data is used. They also might feel “out of the loop” with how their contributions are helping to advance research.
Worst Case Scenario: Not Knowing Who is Accessing Your Data
Data usage logs help increase transparency for participants.
Sharing details with participants about who is accessing their data, when, and why, gives them more transparency into the study process and allows them to stay informed about its progress. Having this information shows participants that their data is useful and helpful in addressing current research questions.
Best Practice: Data Usage Log
What to prepare?
Know what institutions request, or have access, to participant data.
Within the mHealth app, show participants the names of each of these institutions, what data they are accessing, and at what time.
Gather information from institutions about their use of participant data.
Before giving institutions access to participants’ information, ask them to share a statement about the purpose for their access (e.g., what hypothesis they are testing, what research questions they are trying to answer), and website link to the project, if available. This information can then be shared with each participant.