Article type
Abstract
Background: The ongoing global digital transformation has led to an unprecedented surge in the generation of personal data, illuminating two contrasting trends: the drive to improve data accessibility for research and innovation on one hand, and the imperative to safeguard citizens' privacy rights under regulations like the European and General Data Protection Regulation (GDPR) data strategy on the other hand. Information on how and to what extent citizens wish to be involved in data governance, and under which conditions, has not been systematically summarized yet.
Objectives: This overview of reviews explores the implications in terms of relevance, meaningfulness, feasibility, and appropriateness of models of citizen participation in health data governance.
Methods: We followed the Joanna Briggs Institute (JBI) guidelines for umbrella reviews and searched eight databases until October 2023, utilizing librarian-validated search terms for “data governance”, “models of participation” and “citizens”. After independent screening for relevance based on predetermined inclusion criteria and quality assessment by two reviewers, 36 reviews (2011-2023) were included.
Results: This review revealed limited public awareness of data practices, but as knowledge grew, willingness to engage in data governance increased. Citizens raised concerns about potential misuse by commercial entities or individuals with malicious intentions, yet they were open to participation when perceived benefits outweighed potential risks. Participation of citizens was influenced by several conditions, namely trust, value, control, transparency, responsibility and accountability, and privacy and data security. Various variables impacted on citizens’ perspectives, such as demographics, regional differences (the United States versus China), and individuals' health conditions. A subgroup analysis revealed that younger participants embraced data governance with fewer concerns, while older counterparts exhibited reduced support due to unfamiliarity with Internet Technology (IT).
Conclusion: The evidence suggests that when using digital data for innovation in healthcare, some form of control by citizens should be considered. This overview of reviews provides building blocks for a shared decision model that involves citizens in the governance of their personal data and as such enhances data solidarity.
Objectives: This overview of reviews explores the implications in terms of relevance, meaningfulness, feasibility, and appropriateness of models of citizen participation in health data governance.
Methods: We followed the Joanna Briggs Institute (JBI) guidelines for umbrella reviews and searched eight databases until October 2023, utilizing librarian-validated search terms for “data governance”, “models of participation” and “citizens”. After independent screening for relevance based on predetermined inclusion criteria and quality assessment by two reviewers, 36 reviews (2011-2023) were included.
Results: This review revealed limited public awareness of data practices, but as knowledge grew, willingness to engage in data governance increased. Citizens raised concerns about potential misuse by commercial entities or individuals with malicious intentions, yet they were open to participation when perceived benefits outweighed potential risks. Participation of citizens was influenced by several conditions, namely trust, value, control, transparency, responsibility and accountability, and privacy and data security. Various variables impacted on citizens’ perspectives, such as demographics, regional differences (the United States versus China), and individuals' health conditions. A subgroup analysis revealed that younger participants embraced data governance with fewer concerns, while older counterparts exhibited reduced support due to unfamiliarity with Internet Technology (IT).
Conclusion: The evidence suggests that when using digital data for innovation in healthcare, some form of control by citizens should be considered. This overview of reviews provides building blocks for a shared decision model that involves citizens in the governance of their personal data and as such enhances data solidarity.