1. Lay health worker research personnel for home-based data collection in clinical and translational research: Qualitative and quantitative findings from two trials in hard-to-reach populations.
- Author
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Wagner J, Barth C, Bermúdez-Millán A, Buxton OM, Kong S, Kuoch T, Lampert R, Pérez-Escamilla R, Scully M, and Segura-Pérez S
- Abstract
Aims: The role of lay health workers in data collection for clinical and translational research studies is not well described. We explored lay health workers as data collectors in clinical and translational research studies. We also present several methods for examining their work, i.e., qualitative interviews, fidelity checklists, and rates of unusable/missing data., Methods: We conducted 2 randomized, controlled trials that employed lay health research personnel (LHR) who were employed by community-based organizations. In one study, n = 3 Latina LHRs worked with n = 107 Latino diabetic participants. In another study, n = 6 LHR worked with n = 188 Cambodian American refugees with depression. We investigated proficiency in biological, behavioral, and psychosocial home-based data collection conducted by LHR. We also conducted in-depth interviews with lay LHR to explore their experience in this research role. Finally, we described the training, supervision, and collaboration for LHR to be successful in their research role., Results: Independent observers reported a very high degree of fidelity to technical data collection protocols (>95%) and low rates of missing/unusable data (1.5%-11%). Qualitative results show that trust, training, communication, and supervision are key and that LHR report feeling empowered by their role. LHR training included various content areas over several weeks with special attention to LHR and participant safety. Training and supervision from both the academic researchers and the staff at the community-based organizations were necessary and had to be well-coordinated., Conclusions: Carefully selected, trained, and supervised LHRs can collect sophisticated data for community-based clinical and translational research., Competing Interests: Outside of the current work, Dr Orfeu M. Buxton discloses that he received subcontract grants to Penn State from Proactive Life (formerly Mobile Sleep Technologies), doing business as SleepSpace (National Science Foundation grant #1622766 and NIH/National Institute on Aging Small Business Innovation Research Program R43AG056250, R44 AG056250), received honoraria/travel support for lectures from Boston University, Boston College, Tufts School of Dental Medicine, New York University, University of Miami, University of South Florida, University of Utah, University of Arizona, Harvard Chan School of Public Health, Eric H. Angle Society of Orthodontists, and Allstate, consulting fees for SleepNumber, and received an honorarium from the National Sleep Foundation for his role as the Editor in Chief of the journal Sleep Health. All other authors have no competing interests to declare., (© The Author(s) 2023.)
- Published
- 2023
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