Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USA
Objectives Individuals 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 Projec...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2023-08-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/8/e072546.full |
| _version_ | 1826978976664387584 |
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| author | David M Maahs Ashby F Walker Michael J Haller Matthew J Gurka Stephanie L Filipp Claudia Anez-Zabala Xanadu Roque Lauren Figg Rayhan Lal Ananta Addala Melanie Hechavarria |
| author_facet | David M Maahs Ashby F Walker Michael J Haller Matthew J Gurka Stephanie L Filipp Claudia Anez-Zabala Xanadu Roque Lauren Figg Rayhan Lal Ananta Addala Melanie Hechavarria |
| author_sort | David M Maahs |
| collection | DOAJ |
| description | Objectives Individuals 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.Design Prospective 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.Setting Data were collected at the patient level, provider level and clinic level between 1 May 2021 and 31 July 2022.Participants Participants and study personnel were recruited from 33 Project ECHO Diabetes sites in California and Florida.Outcomes We 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.Results In 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.Conclusions Funded 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. |
| first_indexed | 2024-03-12T11:22:02Z |
| format | Article |
| id | doaj.art-85b7437ead76465ba63aa5f427f50461 |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2025-02-18T05:21:46Z |
| publishDate | 2023-08-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-85b7437ead76465ba63aa5f427f504612024-11-15T10:20:09ZengBMJ Publishing GroupBMJ Open2044-60552023-08-0113810.1136/bmjopen-2023-072546Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USADavid M Maahs0Ashby F Walker1Michael J Haller2Matthew J Gurka3Stephanie L Filipp4Claudia Anez-Zabala5Xanadu Roque6Lauren Figg7Rayhan Lal8Ananta Addala9Melanie Hechavarria10Division of Endocrinology, Department of Pediatrics, Stanford University School of Medicine, Stanford, California, USAUniversity of Florida Diabetes Institute, Gainesville, Florida, USAUniversity of Florida Diabetes Institute, Gainesville, Florida, USADepartment of Public Health Sciences, University of Virginia, Charlottesville, Virginia, USADepartment of Pediatrics, University of Florida, Gainesville, Florida, USADepartment of Pediatrics, University of Florida, Gainesville, Florida, USADepartment of Pediatrics, University of Florida, Gainesville, Florida, USADepartment of Pediatrics, Division of Pediatric Endocrinology, Stanford University, Stanford, California, USADivision of Endocrinology, Department of Medicine, Stanford University School of Medicine, Stanford, California, USAStanford Diabetes Research Center, Stanford, California, USADepartment of Pediatrics, University of Florida, Gainesville, Florida, USAObjectives Individuals 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.Design Prospective 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.Setting Data were collected at the patient level, provider level and clinic level between 1 May 2021 and 31 July 2022.Participants Participants and study personnel were recruited from 33 Project ECHO Diabetes sites in California and Florida.Outcomes We 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.Results In 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.Conclusions Funded 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.https://bmjopen.bmj.com/content/13/8/e072546.full |
| spellingShingle | David M Maahs Ashby F Walker Michael J Haller Matthew J Gurka Stephanie L Filipp Claudia Anez-Zabala Xanadu Roque Lauren Figg Rayhan Lal Ananta Addala Melanie Hechavarria Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USA BMJ Open |
| title | Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USA |
| title_full | Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USA |
| title_fullStr | Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USA |
| title_full_unstemmed | Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USA |
| title_short | Recruiting historically under-represented individuals into Project ECHO Diabetes: using barrier analysis to understand disparities in clinical research in the USA |
| title_sort | recruiting historically under represented individuals into project echo diabetes using barrier analysis to understand disparities in clinical research in the usa |
| url | https://bmjopen.bmj.com/content/13/8/e072546.full |
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