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

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.

Household food insecurity is associated with greater autonomic dysfunction testing score in Latinos with type 2 diabetes

“…Early morning assessments were performed by CHW research personnel [20] to obtain fasting blood and urine samples. Fasting blood samples were collected early morning (i.e., before 9 am) in the participants' homes from an antecubital vein, using sterile technique, by the study's phlebotomist and trained data collector.…”

“…The sample was low-income, Latino and findings may not generalize to other populations. Limitations are generally outweighed by the study's strengths including detailed functional challenge tests and a vulnerable and hard-to-reach clinical sample conducted in the participant's homes by carefully selected, thoroughly trained, and closely supervised CHWs [20].…”