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Developing pathways for community-led research with big data: a content analysis of stakeholder interviews
Shira Grayson1,2, Megan Doerr3, Joon-Ho Yu2,4,5
1Sage Bionetworks, 2901 Third Avenue, Seattle, WA, 98121, United States of America.
Health Research Policy and Systems
|July 10, 2020
Summary
Community leaders
Area of Science:
- Health Informatics
- Community-Based Participatory Research
Background:
- Big data (BD) is crucial in health research, yet underrepresented populations are often excluded from BD research.
- Existing efforts to increase diversity and engagement in research need stronger policy support for equitable health outcomes.
Purpose of the Study:
- To understand community leaders' perspectives on big data (BD) use cases in health research.
- To identify barriers and needs for enabling community-led BD science.
Main Methods:
- Qualitative content analysis of semi-structured interviews with 16 community leaders.
Main Results:
- A Big Data (BD) Engagement Model was developed, illustrating factors influencing community engagement in BD research.
Conclusions:
- The BD Engagement Model aims to foster dialogue between communities and researchers on engaged BD research.
- Study findings will inform future project phases, focusing on fundable frameworks and policy options for community-based BD projects.
Keywords:
Big Datacommunity engagementcommunity-led researchpatient-led researchpublic healthqualitative analysisMore Related Videos
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