What does this research mean for the field?

Although citizens express favorable attitudes toward health data governance, their current involvement remains largely tokenistic, requiring improved trust, digital literacy, and clear personal and public benefits to achieve meaningful participation. Novelty: ClaimNovelty.SYNTHESIS. Consensus alignment: ConsensusAlignment.NEUTRAL.

What question did this study set out to answer?

Synthesize existing systematic review evidence regarding how citizens participate in digital health data governance and what constitutes meaningful, effective engagement.

August 29, 2026Big Data & SocietyOpen Access

Empowering citizens in digital health data governance: Insights from an overview of reviews

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Synthesize existing systematic review evidence regarding how citizens participate in digital health data governance and what constitutes meaningful, effective engagement.
Conducted an overview of reviews synthesizing findings from 35 systematic reviews published between 2011 and 2023.
Evaluated the extracted evidence on citizen involvement and attitudes through the multidimensional framework of feasibility, appropriateness, meaningfulness, and effectiveness.
Citizens generally express favorable attitudes toward health data use, yet current participation mechanisms remain predominantly tokenistic, restricted to informing, placation, or basic consultation.
Effective and meaningful data governance requires establishing public trust, ensuring health and digital literacy, using trusted intermediaries, and securing both individual care benefits and broader scientific research value.

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Implication

Overview of reviews reveals current citizen participation in health data governance remains largely tokenistic, highlighting the need for trust, literacy, and mutual benefit to empower individuals.

Cite This Study

Schyndel et al. (2026) studied this question.

synapsesocial.com/papers/6a9299bb8e5d7d1fc0c11d0a https://doi.org/10.1177/20539517261467358

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Implication

Overview of reviews reveals current citizen participation in health data governance remains largely tokenistic, highlighting the need for trust, literacy, and mutual benefit to empower individuals.

Empowering citizens in digital health data governance: Insights from an overview of reviews

Key Points

Discussion

Implication

Cite This Study

Empowering citizens in digital health data governance: Insights from an overview of reviews

Key Points

Discussion

Implication

Cite This Study

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