Study Details
When sharing information about a research study with the public, be sure to include details about what data this study will collect from participants, why, and how this data will be managed and used by the research team. Providing the public with this information can help build trust with eligible participants and reduce confusion about what is expected of them as a contributor to the study.
Incomplete study information can lead to confusion and distrust.
A public-facing website can be a useful tool to promote a study and enroll eligible participants. However, this website should also include information about what, why, and how data will be collected. Not sharing this important privacy information could cause participants to have different expectations about their involvement in the study and how their data will be managed by the research team. These differing expectations can lead eligible participants to feel confusion and distrust, or increase their uncertainty about participating in future studies.
Worst Case Scenario: Study Details that are Missing or Confusing
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Sharing study details with eligible participants can build trust.
The study’s website is an important opportunity to be transparent about privacy practices and to explain how participants’ data will be used and collected. By sharing this information upfront, people who are interested in participating can have a better idea of what to expect when they sign up for the study, and can build trust with the researchers who could be handling their personal health data.
Best Practice: Study Details that are Transparent and Easy to Understand
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What to prepare?
Step 1
Summarize relevant study information for eligible participants.
Present written information at a middle school reading level and add visual elements for interest and ease of reading. Emphasize actions that eligible participants can take in order to sign up for the study and control how their data is collected, stored, or shared with researchers. Share information about the research team so eligible participants can decide if it is worthwhile to share their health data and contribute to the study.
Step 2
Make sure study details are easy to find for later reference.
If an enrolled participant has questions about the study at a later time, make sure these details are located in a place that is easy to find again in the app or on the website.
Resources
Case Studies
mPower 2.0
Sage Bionetworks
elevateMS
Sage Bionetworks
The PRIDE Study
Stanford University and UCSF
ResearchBank
Kaiser Permanente
Resources
Study Details Patterns