Challenges with data sharing can lead to participant frustration.
Research participants who collect their data in an mHealth app might want to also share this data with family members, caregivers, or clinicians to make informed care decisions. If an mHealth app does not allow participants to easily share this data, the participant can feel as though their data is trapped on their phone, isolated from their other health records, and not useful to anyone other than the mHealth research team.
mHealth apps that offer return of results usually only provide raw data files. However, participants might not have control over what data they want included and shared. These files are also difficult to import into Electronic Health Record systems, and are not formatted so that participants, family members, and clinicians can interpret the data in a meaningful way.
Worst Case Scenario: Participant is Unable to Share Important Data
A private share link gives participants control and avoids data silos.
Including a private share link feature gives participants the option to simply and securely share their health data outside of the mHealth app. This feature allows participants to choose what data to share, with whom, and when. Linking to this data, formatted in a way that is easy to read and interpret, gives the participant and their family members, friends, and clinicians access to potentially meaningful health insights.
Best Practice: Private Share Link
What to prepare?
Create a checklist of the participants’ mHealth data.
Show participants the types of data that the mHealth app is collecting and can be shared externally via the private share link. Give participants the option to select which of this data they want to share with family, caregivers, or clinicians.
Decide how long the private share link should remain active.
Clearly state the time restrictions (if any) of the the private share link to the participant. Within the app, show a real-time countdown of the time remaining before the link expires.
Present the participant’s data in a meaningful way.
To reduce a “data dump” on participants and their family members, caregivers, and clinicians, present the shared data using graphs, short explanations, and other elements that are easy to read and interpret.
Projects by IF
23andMe Test Info
An example of how to present data meaningfully
Return of Research Results
National Human Genome Research Institute
Advanced Practices for Returning Individual Research Results
National Academies Consensus Report
Private Share Link Patterns