What Happens to Study Data After Lock - Do Participants Care?

Participants finish a study, uninstall the app, and move on. But for study teams, the data journey is just beginning.

And increasingly, participants are asking what happens next. Who sees the data? Where does it go? Will it be used again?

This post outlines the path data typically takes after database lock - and why transparency about that path is worth the effort.

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A Typical Post-Lock Timeline

1. Lock
No more changes to the main dataset. Entries are frozen. Queries should already be resolved.

2. Export
Data is downloaded, often in multiple formats, and passed to the analysis team. Audit trails stay in place.

3. Cleaning and derivation
Some variables are calculated from raw inputs. Flags are added. Protocol deviations are accounted for.

4. Analysis and reporting
Statistical summaries, tables, and visuals are produced. These feed into the Clinical Study Report (CSR).

5. Archive and access
Data is stored securely - often for years. In some cases, it is shared with regulators or made available for future research.

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What Participants Often Wonder

• Is my data still being looked at?
• Can it be used in other studies?
• Was it actually useful?
• Will I ever hear what the study found?

These are reasonable questions - and answering them helps build long-term trust.

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Transparency, Even in Summary

You do not need to give participants the full CSR. But sending a clear, plain-language summary of what happened post-lock helps:

• Reinforce the value of their involvement
• Show that the study was taken seriously
• Explain how their privacy continues to be protected

Participants rarely hear anything after their last diary entry. A follow-up that closes that loop can be surprisingly powerful.

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Planning Ahead

• Add a field for participant summary consent in your eConsent process
• Draft a summary while your CSR is being finalised
• Use neutral platforms (e.g. web links) to host results accessibly

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The data belongs to the study, but the experience belongs to the participant. A little post-study communication goes a long way.

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