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result(s) for
"Foley, Barbara"
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If it wasn’t for us, there would be no data: stakeholders’ perspectives on patient involvement in the use of health data in Ireland
by
Foley, Barbara
,
Flynn, Rachel
,
Bennett, Kathleen E.
in
Confidentiality
,
Focus groups
,
General Data Protection Regulation
2025
Background
Legislative reform in Ireland and Europe, including the introduction of a Health Information Bill in Ireland and the European Health Data Space (EHDS) Regulation, promote strong governance of health data, including control over how health data is used for different purposes, such as individual care, research, planning and policy-making. The aim of this study was to explore key stakeholders’ perspectives on the role of patients in enabling inclusive and ethical use of health data for primary and secondary purposes in Ireland.
Methods
This was a cross-sectional qualitative study with focus group design. Thirty-five participants were evenly distributed across five groups: Academics and Researchers; Data Controllers, Data Protection Officers and Ethics Experts; Patients and Public; Healthcare Professionals and the Industry Group. A semi-structured approach guided by a topic guide was used, and thematic data analysis was conducted.
Results
This study identified strong support for increased patient involvement. However, contradictions in participants’ views within and across groups were found particularly around patient control over health data and data ownership and embedding Patient and Public Involvement (PPI) in research. Most of the participants agreed that patient autonomy over health data is of ‘vital’ importance; yet they advocated for staged and delayed patient access. Similarly, the participants believed that PPI was required to drive the direction of research and funding allocation; however, patients’ lack of understanding of research areas was a challenge. Concerns were expressed around informed consent required for sharing of patient data, particularly with the industry, and around the timing of consent when patients are at their most vulnerable.
Conclusion
Participants expressed strong support for increased patient involvement in the use of health data in Ireland; however, there were contrasting views in relation to data control and ownership, consent processes and PPI. These findings have implications for policy development in the implementation of the EHDS in Europe, and the establishment of the Health Data Access Body in Ireland. This study emphasises the importance of patient involvement to support successful implementation of new health information systems and data access infrastructure.
Plain English summary
New legal and regulatory frameworks are being introduced across Europe, including the European Health Data Space Regulation, which will make it easier to use and exchange electronic patient health records for care in the European Union. This regulation also promotes strong control over how health data is managed and used for different purposes, including health research. Data that is used for individual health care is referred to as primary use, and if it is used for other purposes, for example in research, it is referred to as secondary use. This study aims to explore the perspectives of key people on the role of patients in how their health data is used for primary and secondary purposes in Ireland. The study involved focus groups with academics and researchers; data and ethics experts; healthcare professionals; patients and public; and the industry. Focus groups involve meetings with participants with different backgrounds to discuss specific topics to help explore different perspectives. The findings suggested strong support for increased patient involvement in decisions around how their data is used, although views were inconsistent around who should have control over, or who owns health data, and how to incorporate Patient and Public Involvement (PPI) in research. This study emphasises the importance of increased patient involvement to support successful implementation of new health information systems and policies in all European Union (EU) Member States.
Journal Article
Marxist Literary Criticism Today
2019
*Winner of the CHOICE Outstanding Academic Book Prize, 2019*
*Shortlisted for the Isaac Deutscher Prize 2019*
Why Marxism? Why today? In the first introduction to Marxist literary criticism to be published in decades, Barbara Foley argues that Marxism continues to offer the best framework for exploring the relationship between literature and society. She lays out in clear terms the principal aspects of Marxist methodology - historical materialism, political economy and ideology critique - as well as key debates, among Marxists and non-Marxists alike, about the nature of literature and the goals of literary criticism and pedagogy. Foley examines through the empowering lens of Marxism a wide range of texts: from Jane Austen's Pride and Prejudice to E. L. James's Fifty Shades of Grey; from Frederick Douglass's 'What to the Slave Is the Fourth of July?' to Annie Proulx's 'Brokeback Mountain'; from W.B. Yeats's 'The Second Coming' to Claude McKay's 'If We Must Die'.
Tributes to Dick Ohmann
by
Foley, Barbara
,
Keeton, Pat
,
Entin, Joseph
in
A Tribute to Richard Ohmann
,
Academic freedom
,
Authors
2022
Others were moved by English in America (1976), which, more than any work of its era, critically examined the politics routinely embedded in pedagogy in the humanities. Besides appreciating Dr. Ohmann's outstanding contributions to critical theory, literary and cultural history, and humanistic pedagogy, all the participants in the roundtable were personally acquainted with Dr. Ohmann through the MLA. Others have worked with Dr. Ohmann over the decades in bringing before the Delegate Assembly dozens of resolutions concerning everything from supporting unionization to opposing attacks on academic freedom, backing student movements against sweatshop labor to supporting undocumented students' demands for access to financial aid. People volunteer to create buttons (one said \"Mother Language Association\"); they put together posters (one quoted Blake: \"The tygers of wrath are wiser than the horses of instruction\"); they circulate petitions, like one against going to Mayor Daley's Chicago for the next MLA. The MLA business meeting soundly voted to establish the Commission; it would become a significant force within the MLA, and it provided a model for similar efforts in other academic and professional organizations.
Journal Article
Spectres of 1919
2010,2003,2008
A look at the violent \"Red Summer of 1919\" and its
intersection with the highly politicized New Negro movement and the
Harlem Renaissance
With the New Negro movement and the Harlem Renaissance, the
1920s was a landmark decade in African American political and
cultural history, characterized by an upsurge in racial awareness
and artistic creativity. In Spectres of 1919 Barbara Foley
traces the origins of this revolutionary era to the turbulent year
1919, identifying the events and trends in American society that
spurred the black community to action and examining the forms that
action took as it evolved.
Unlike prior studies of the Harlem Renaissance, which see 1919
as significant mostly because of the geographic migrations of
blacks to the North, Spectres of 1919 looks at that year
as the political crucible from which the radicalism of the 1920s
emerged. Foley draws from a wealth of primary sources, taking a
bold new approach to the origins of African American radicalism and
adding nuance and complexity to the understanding of a fascinating
and vibrant era.