Strengthening Healthcare and Research Engagement through Data Sharing: SHARE

NIH RePORTER · NIH · R01 · $157,869 · view on reporter.nih.gov ↗

Abstract

Project Summary/Abstract Coronary artery bypass surgery (CABG) is associated with stroke , cognitive decline, and dementia. Up to 25% of patients show signs of brain emboli after CABG, and even minor strokes can reveal hidden brain damage and worsen cognitive decline post-surgery. This bioethics supplement focuses on neurohealth data sharing and is nested within the parent grant (R01NS123639). While data sharing practices are rapidly evolving, there is a gap in understanding perspectives of the public, research participants, and stakeholders regarding these practices and how these perspectives may deter research participation. The objective of Strengthening Healthcare and Research Engagement through Data Sharing (SHARE) is to evaluate the perspectives of diverse members of the public, research participants, and the clinical research community regarding current data sharing practices in neurohealth research to create more inclusive, patient informed comprehensive data-sharing practices. The overall objective of the proposed bioethics supplement is to explore timely neuroethical questions to evaluate diverse perspectives, specifically from underrepresented racial and ethnic minority groups, to foster more inclusive, patient-informed comprehensive data sharing practices. We expect that results from this supplement will impact bioethics-related policy and capacity-building in the field while providing an evidence base for future policy directions. Guided by strong preliminary data, we will conduct two specific aims: 1) evaluate perspectives of multiple stakeholders participating in the ROMA:Cognition study related to priorities and concerns about neurohealth data access and sharing, and 2) evaluate public perspectives in the United States on comprehensive data sharing of neurohealth research data. This research is significant because it will provide new insight into public perspectives on comprehensive data sharing and ways that researchers can build trust in research. SHARE is aligned with NINDS priorities for neuroscience research, specifically returning research results to participants, informed consent-related issues on data sharing, collecting, and sharing neurohealth data. This supplement will increase the likelihood of impacting bioethics-related policy and capacity building in the field, provide an evidence-base for future policy directions, and address timely bioethical concerns related to data sharing from underrepresented racial and ethnic minority groups.

Key facts

NIH application ID
11062246
Project number
3R01NS123639-04S1
Recipient
COLUMBIA UNIVERSITY HEALTH SCIENCES
Principal Investigator
Mario FL Gaudino
Activity code
R01
Funding institute
NIH
Fiscal year
2024
Award amount
$157,869
Award type
3
Project period
2021-06-15 → 2025-11-30