Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation; a mixed method study
Background: The lack of racial and ethnic diversity in clinical trials leads to skewed findings, limited generalizability, inequitable health outcomes for people of color, and insufficient access to innovative therapies. Our objective was to compare perceptions of barriers to participation in trials...
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| Format: | Article |
| Language: | English |
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Elsevier
2024-04-01
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| Series: | Contemporary Clinical Trials Communications |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2451865424000097 |
| _version_ | 1797256381719379968 |
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| author | Maureen Shields Anne Rivelli Yamilé Molina Osondi Ozoani-Lohrer Cheryl Lefaiver Marybeth Ingle Veronica Fitzpatrick |
| author_facet | Maureen Shields Anne Rivelli Yamilé Molina Osondi Ozoani-Lohrer Cheryl Lefaiver Marybeth Ingle Veronica Fitzpatrick |
| author_sort | Maureen Shields |
| collection | DOAJ |
| description | Background: The lack of racial and ethnic diversity in clinical trials leads to skewed findings, limited generalizability, inequitable health outcomes for people of color, and insufficient access to innovative therapies. Our objective was to compare perceptions of barriers to participation in trials for people of color and trial staff to provide tangible solutions for improving diversity among study participants. Methods: This mixed method study utilized semi-structured interviews and surveys to evaluate barriers to participation and solutions to improve racial and ethnic diversity in clinical trials among healthcare system trial staff and community members from the same region. Through thematic analysis via coded transcripts and quantitative analysis via survey data, social support theory constructs were identified to evaluate where perceptions of barriers and solutions overlap and where they diverge. Results: A total of 55 trial staff and 75 community members participated in the study. Trial staff identified logistics and patients’ unwillingness to receive additional treatments as perceived barriers to participation, while community members stated lack of information and lack of trust in their care team. Both groups identified hesitance toward research as a prominent barrier. Solutions related to informational support demonstrated the most overlap between groups, while instrumental support showed the most discordance. Conclusion: Solutions for improving racial and ethnic diversity in clinical trial participation are multi-faceted and have various levels of impact. Overlap and discordance of opinions regarding solutions should be further evaluated, and implementation of solutions should be carefully considered. |
| first_indexed | 2024-03-08T06:21:52Z |
| format | Article |
| id | doaj.art-ef985d318a674a8ab91d336acf580c92 |
| institution | Directory Open Access Journal |
| issn | 2451-8654 |
| language | English |
| last_indexed | 2024-04-24T22:20:51Z |
| publishDate | 2024-04-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Contemporary Clinical Trials Communications |
| spelling | doaj.art-ef985d318a674a8ab91d336acf580c922024-03-20T06:10:49ZengElsevierContemporary Clinical Trials Communications2451-86542024-04-0138101262Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation; a mixed method studyMaureen Shields0Anne Rivelli1Yamilé Molina2Osondi Ozoani-Lohrer3Cheryl Lefaiver4Marybeth Ingle5Veronica Fitzpatrick6Advocate Aurora Research Institute, Milwaukee, WI, USA; Advocate Health, Milwaukee, WI, USA; Corresponding author. Epidemiologist, Advocate Health, 945 N 12th St, Milwaukee, WI, 53233, USA.Advocate Aurora Research Institute, Milwaukee, WI, USA; Advocate Health, Milwaukee, WI, USAUniversity of Illinois, Chicago, IL, USAAdvocate Aurora Research Institute, Milwaukee, WI, USA; Advocate Health, Milwaukee, WI, USAAdvocate Aurora Research Institute, Milwaukee, WI, USA; Advocate Health, Milwaukee, WI, USAAdvocate Aurora Research Institute, Milwaukee, WI, USA; Advocate Health, Milwaukee, WI, USAAdvocate Aurora Research Institute, Milwaukee, WI, USA; Advocate Health, Milwaukee, WI, USABackground: The lack of racial and ethnic diversity in clinical trials leads to skewed findings, limited generalizability, inequitable health outcomes for people of color, and insufficient access to innovative therapies. Our objective was to compare perceptions of barriers to participation in trials for people of color and trial staff to provide tangible solutions for improving diversity among study participants. Methods: This mixed method study utilized semi-structured interviews and surveys to evaluate barriers to participation and solutions to improve racial and ethnic diversity in clinical trials among healthcare system trial staff and community members from the same region. Through thematic analysis via coded transcripts and quantitative analysis via survey data, social support theory constructs were identified to evaluate where perceptions of barriers and solutions overlap and where they diverge. Results: A total of 55 trial staff and 75 community members participated in the study. Trial staff identified logistics and patients’ unwillingness to receive additional treatments as perceived barriers to participation, while community members stated lack of information and lack of trust in their care team. Both groups identified hesitance toward research as a prominent barrier. Solutions related to informational support demonstrated the most overlap between groups, while instrumental support showed the most discordance. Conclusion: Solutions for improving racial and ethnic diversity in clinical trial participation are multi-faceted and have various levels of impact. Overlap and discordance of opinions regarding solutions should be further evaluated, and implementation of solutions should be carefully considered.http://www.sciencedirect.com/science/article/pii/S2451865424000097Clinical trials participationDiversity in clinical trialsBarriers to participationSolutions for participationMixed method |
| spellingShingle | Maureen Shields Anne Rivelli Yamilé Molina Osondi Ozoani-Lohrer Cheryl Lefaiver Marybeth Ingle Veronica Fitzpatrick Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation; a mixed method study Contemporary Clinical Trials Communications Clinical trials participation Diversity in clinical trials Barriers to participation Solutions for participation Mixed method |
| title | Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation; a mixed method study |
| title_full | Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation; a mixed method study |
| title_fullStr | Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation; a mixed method study |
| title_full_unstemmed | Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation; a mixed method study |
| title_short | Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation; a mixed method study |
| title_sort | trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in clinical trial participation a mixed method study |
| topic | Clinical trials participation Diversity in clinical trials Barriers to participation Solutions for participation Mixed method |
| url | http://www.sciencedirect.com/science/article/pii/S2451865424000097 |
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