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Community engagement in epidemiological research
Jessica N Sapienza1, Giselle Corbie-Smith, Sarah Keim
1National Institute of Child Health and Human Development, National Institute of Health, Bethesda, MD 20892, USA. sapienzj@mail.nih.gov
Summary
Effective community engagement is vital for the success of large observational health studies like the National Children's Study (NCS). Building trust and partnerships enhances participant recruitment and retention in epidemiological research.
Area of Science:
- Public Health Research
- Epidemiology
- Community Engagement
Background:
- Community engagement is increasingly recognized as crucial in health research planning and implementation.
- Its specific role in non-interventional epidemiological and observational studies, like the National Children's Study (NCS), requires clarification.
- The NCS, a large-scale longitudinal study of 100,000 children and families, serves as a model for developing community engagement strategies in this context.
Purpose of the Study:
- To describe the community engagement activities undertaken during the planning phases of the National Children's Study (NCS).
- To provide insights into developing effective community engagement strategies for longitudinal epidemiologic research.
Main Methods:
- Description of community engagement activities during the NCS planning phase.
- Analysis of challenges encountered in engaging communities prior to site determination.
Main Results:
- Significant challenges exist in community engagement for epidemiologic research before research sites are finalized.
- Key issues include defining the community, identifying representative residents or institutions, and establishing trust through respectful interaction.
- These challenges must be addressed to facilitate successful engagement once communities are designated.
Conclusions:
- Community engagement is essential for the long-term success of longitudinal epidemiologic studies.
- Forming a community partnership based on mutual respect is critical for an enduring relationship.
- Genuine engagement can improve participant recruitment, retention, and overall satisfaction.
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