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Accepted for/Published in: JMIR Formative Research

Date Submitted: May 8, 2024
Date Accepted: Oct 11, 2024

The final, peer-reviewed published version of this preprint can be found here:

Strategies to Implement a Community-Based, Longitudinal Cohort Study: The Whole Communities-Whole Health Case Study

Bouchacourt L, Smith S, Mackert M, Almalki S, Awad G, Barczyk A, Bearman SK, Castelli D, Champagne F, de Barbaro K, Garcia S, Johnson K, Kinney K, Lawson K, Nagy Z, Quinones Camacho L, Rodríguez L, Schnyer D, Thomaz E, Upshaw S, Zhang Y

Strategies to Implement a Community-Based, Longitudinal Cohort Study: The Whole Communities-Whole Health Case Study

JMIR Form Res 2024;8:e60368

DOI: 10.2196/60368

PMID: 39636676

PMCID: 11659690

Strategies to Implement a Community-Based, Longitudinal Cohort Study: The Whole Communities-Whole Health Case Study

  • Lindsay Bouchacourt; 
  • Sarah Smith; 
  • Michael Mackert; 
  • Shoaa Almalki; 
  • Germine Awad; 
  • Amanda Barczyk; 
  • Sarah Kate Bearman; 
  • Darla Castelli; 
  • Frances Champagne; 
  • Kaya de Barbaro; 
  • Shirene Garcia; 
  • Karen Johnson; 
  • Kerry Kinney; 
  • Karla Lawson; 
  • Zoltan Nagy; 
  • Laura Quinones Camacho; 
  • Lourdes Rodríguez; 
  • David Schnyer; 
  • Edison Thomaz; 
  • Sean Upshaw; 
  • Yan Zhang

ABSTRACT

This paper discusses the implementation of the Whole Communities-Whole Health (WCWH) initiative, which is a community-based, longitudinal cohort study. WCWH seeks to better understand the impact of location on family health and child development, while also providing support for families participating in the study. Implementing a longitudinal study that is both comprehensive in the data it is collecting and inclusive in the population it is representing are what make WCWH extremely challenging. This paper highlights the learning process the initiative has gone through to identify effective strategies for implementing this type of research study and work towards building a new model for community engaged research. Through iterative testing following the Plan-Do-Study-Act (PDSA) model, three main strategies for implementation were identified. These strategies are: 1) creating a data collection schedule that balances participant burden and maintains temporality across data types, 2) facilitating multiple opportunities for qualitative and quantitative input from faculty, families, and non-participant community members, and 3) establishing an “open-door” policy for data analysis and interpretation. The present paper serves as a guide and provides resources for other researchers wanting to implement a multi-disciplinary and community-based cohort study.


 Citation

Please cite as:

Bouchacourt L, Smith S, Mackert M, Almalki S, Awad G, Barczyk A, Bearman SK, Castelli D, Champagne F, de Barbaro K, Garcia S, Johnson K, Kinney K, Lawson K, Nagy Z, Quinones Camacho L, Rodríguez L, Schnyer D, Thomaz E, Upshaw S, Zhang Y

Strategies to Implement a Community-Based, Longitudinal Cohort Study: The Whole Communities-Whole Health Case Study

JMIR Form Res 2024;8:e60368

DOI: 10.2196/60368

PMID: 39636676

PMCID: 11659690

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