Health data sharing attitudes towards primary and secondary use of data: a systematic review

Cascini, Fidelia; Pantovic, Ana; Al-Ajlouni, Yazan A.; Puleo, Valeria; De Maio, Lucia; Ricciardi, Walter

doi:10.1016/j.eclinm.2024.102551

eClinicalMedicine

2024

DOI: 10.1016/j.eclinm.2024.102551

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Health data sharing attitudes towards primary and secondary use of data: a systematic review

Fidelia Cascini,

Ana Pantovic,

Yazan A. Al-Ajlouni

et al.

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2024

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Cited by 4 publications

References 98 publications

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The European Health Data Space can be a boost for research beyond borders

Ganna,

Carracedo,

Christiansen

et al. 2024

Nat Med

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The European Health Data Space can be a boost for research beyond borders

Ganna,

Carracedo,

Christiansen

et al. 2024

Nat Med

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Critical Data for Critical Care: A Primer on Leveraging Electronic Health Record Data for Research From Society of Critical Care Medicine’s Panel on Data Sharing and Harmonization

Heavner,

Kumar,

Anderson

et al. 2024

Critical Care Explorations

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A growing body of critical care research draws on real-world data from electronic health records (EHRs). The bedside clinician has myriad data sources to aid in clinical decision-making, but the lack of data sharing and harmonization standards leaves much of this data out of reach for multi-institution critical care research. The Society of Critical Care Medicine (SCCM) Discovery Data Science Campaign convened a panel of critical care and data science experts to explore and document unique advantages and opportunities for leveraging EHR data in critical care research. This article reviews and illustrates six organizing topics (data domains and common data elements; data harmonization; data quality; data interoperability and digital infrastructure; data access, sharing, and governance; and ethics and equity) as a data science primer for critical care researchers, laying a foundation for future publications from the SCCM Discovery Data Harmonization and Sharing Guiding Principles Panel.

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Data professionals’ attitudes on data privacy, sharing, and consent in healthcare and research

Kaplow,

Downey,

Stewart

et al. 2024

DIGITAL HEALTH

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Objective Individuals who work on health data systems and services are uniquely positioned to understand the risks of health data collection and use. We designed and conducted a survey assessing the perceptions of those who work with health data around health data consent, sharing, and privacy practices in healthcare and clinical research. Methods A 43-item online survey was distributed via a market research firm to individuals (18+) who work with health data in the United States from March to April 2023. Descriptive statistics were calculated for all variables. Associations with demographic variables were assessed using Pearson's X2 tests and ordinal logistic regression. Results Most of our respondents (61.7%) reported that they would trust people to use their health data across various sectors, but more respondents trusted those working in academic medical research (86.5%) and healthcare offices (89.9%) compared to those working in industry (68.2%). Despite this reported trust, a strong majority believed that individuals should have complete control over their health data (97.3%), specific consent should be obtained for each use of their health data (92.0%), and that there should be higher standards of consent and privacy for health records data than other types of data (93.7%). Conclusions Based on our findings, we might infer that people who work with health data generally trust institutions across sectors to protect their health data. However, many would prefer to have complete control over who has access to their health data and how it is used. These insights should be explored further through qualitative studies.

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Health data sharing attitudes towards primary and secondary use of data: a systematic review

Cited by 4 publications

References 98 publications

The European Health Data Space can be a boost for research beyond borders

The European Health Data Space can be a boost for research beyond borders

Critical Data for Critical Care: A Primer on Leveraging Electronic Health Record Data for Research From Society of Critical Care Medicine’s Panel on Data Sharing and Harmonization

Data professionals’ attitudes on data privacy, sharing, and consent in healthcare and research

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