Journal Article

Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USA

Maahs, David M, Hechavarria, Melanie, Filipp, Stephanie L, Addala, Ananta, Roque, Xanadu, Gurka, Matthew J, Haller, Michael J, Lal, Rayhan, Walker, Ashby F, Figg, Lauren, Anez-Zabala, Claudia

2023

Overview

ObjectivesIndividuals under-recruited in diabetes research studies include those not seen at endocrinology centres and those from rural, low socioeconomic and/or under-represented racial/ethnic groups. The purpose of this descriptive analysis is to detail recruitment and retention efforts of Project ECHO Diabetes clinical sites affiliated with Stanford University and University of Florida.DesignProspective collection of participant engagement and qualitative analysis of barriers and facilitators of research engagement within Project ECHO Diabetes, a virtual tele-education programme for healthcare providers in the management of individuals with insulin-requiring diabetes.SettingData were collected at the patient level, provider level and clinic level between 1 May 2021 and 31 July 2022.ParticipantsParticipants and study personnel were recruited from 33 Project ECHO Diabetes sites in California and Florida.OutcomesWe report study completion rates for participants recruited into 33 Project ECHO Diabetes sites. Using barrier analysis, a methodology designed for the real-time assessment of interventions and system processes to identify barriers and facilitators, study personnel identified significant barriers to recruitment and retention and mapped them to actionable solutions.ResultsIn total, 872 participants (California n=495, Florida n=377) were recruited with differing recruitment rates by site (California=52.7%, Florida=21.5%). Barrier analysis identified lack of trust, unreliable contact information, communication issues and institutional review board (IRB) requirements as key recruitment barriers. Culturally congruent staff, community health centre (CHC) support, adequate funding and consent process flexibility were solutions to address recruitment challenges. Barriers to retention were inconsistent postal access, haemoglobin A1c kit collection challenges, COVID-19 pandemic and broadband/connectivity issues. Additional funding supporting research staff and analogue communication methods were identified as solutions address barriers to retention.ConclusionsFunded partnerships with CHCs, trusted by their local communities, were key in our recruitment and retention strategies. IRB consent process flexibility reduced barriers to recruitment. Recruiting historically under-represented populations is feasible with funding aimed to address structural barriers to research participation.

• Publisher: British Medical Journal Publishing Group,BMJ Publishing Group LTD,BMJ Publishing Group
• Subject: Clinical Trial / Community / COVID-19 / Demographics / Diabetes / DIABETES & ENDOCRINOLOGY / Diabetes and Endocrinology / Diabetes Mellitus - therapy / Education / Electronic health records / Ethnicity / Florida / Health Equity / Health facilities / Humans / Medical records / Pandemics / Participation / Patient Participation / Primary care / Prospective Studies / Retention / Socioeconomic factors / STATISTICS & RESEARCH METHODS / Urban areas