Using technology to increase reach and optimize consent experience for a large-scale research program
The consent process for research studies can be burdensome for potential participants due to complex information and lengthy consent forms. This pragmatic study aimed to improve the consent experience and evaluate its impact on participant decision making, study knowledge, and satisfaction with the...
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| Format: | Article |
| Language: | English |
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Cambridge University Press
2025-01-01
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| Series: | Journal of Clinical and Translational Science |
| Subjects: | |
| Online Access: | https://www.cambridge.org/core/product/identifier/S205986612400640X/type/journal_article |
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| author | Emma Coen Daniel P. Judge Samantha Norman John T. Clark Andrew Cates Randolph Thornhill Kelly Hunt Lori McMahon Leslie Lenert Caitlin G. Allen |
| author_facet | Emma Coen Daniel P. Judge Samantha Norman John T. Clark Andrew Cates Randolph Thornhill Kelly Hunt Lori McMahon Leslie Lenert Caitlin G. Allen |
| author_sort | Emma Coen |
| collection | DOAJ |
| description | The consent process for research studies can be burdensome for potential participants due to complex information and lengthy consent forms. This pragmatic study aimed to improve the consent experience and evaluate its impact on participant decision making, study knowledge, and satisfaction with the In Our DNA SC program, a population-based genomic screening initiative. We compared two consent procedures: standard consent (SC) involving a PDF document and enhanced consent (EC) incorporating a pictograph and true or false questions. Decision-making control, study knowledge, satisfaction, and time to consent were assessed. We analyzed data for 109 individuals who completed the SC and 96 who completed the EC. Results indicated strong decision-making control and high levels of knowledge and satisfaction in both groups. While no significant differences were found between the two groups, the EC experience took longer for participants to complete. Future modifications include incorporating video modules and launching a Spanish version of the consent experience. Overall, this study contributes to the growing literature on consent improvements and highlights the need to assess salient components and explore participant preferences for receiving consent information. |
| format | Article |
| id | doaj-art-685128db05d94e62b51e591ad10802df |
| institution | Kabale University |
| issn | 2059-8661 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj-art-685128db05d94e62b51e591ad10802df2025-01-20T12:55:37ZengCambridge University PressJournal of Clinical and Translational Science2059-86612025-01-01910.1017/cts.2024.640Using technology to increase reach and optimize consent experience for a large-scale research programEmma Coen0Daniel P. Judge1Samantha Norman2John T. Clark3Andrew Cates4Randolph Thornhill5Kelly Hunt6Lori McMahon7Leslie Lenert8Caitlin G. Allen9https://orcid.org/0000-0002-6288-3529Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USADepartment of Medicine, Medical University of South Carolina, Charleston, SC, USAIn Our DNA SC, Medical University of South Carolina, Charleston, SC, USABiomedical Informatics Center, Medical University of South Carolina, Charleston, SC, USABiomedical Informatics Center, Medical University of South Carolina, Charleston, SC, USABiomedical Informatics Center, Medical University of South Carolina, Charleston, SC, USADepartment of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USADepartment of Neuroscience, Medical University of South Carolina, Charleston, SC, USABiomedical Informatics Center, Medical University of South Carolina, Charleston, SC, USADepartment of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USAThe consent process for research studies can be burdensome for potential participants due to complex information and lengthy consent forms. This pragmatic study aimed to improve the consent experience and evaluate its impact on participant decision making, study knowledge, and satisfaction with the In Our DNA SC program, a population-based genomic screening initiative. We compared two consent procedures: standard consent (SC) involving a PDF document and enhanced consent (EC) incorporating a pictograph and true or false questions. Decision-making control, study knowledge, satisfaction, and time to consent were assessed. We analyzed data for 109 individuals who completed the SC and 96 who completed the EC. Results indicated strong decision-making control and high levels of knowledge and satisfaction in both groups. While no significant differences were found between the two groups, the EC experience took longer for participants to complete. Future modifications include incorporating video modules and launching a Spanish version of the consent experience. Overall, this study contributes to the growing literature on consent improvements and highlights the need to assess salient components and explore participant preferences for receiving consent information.https://www.cambridge.org/core/product/identifier/S205986612400640X/type/journal_articleConsentrecruitmentpopulation screeninglarge-scale research programsenhanced consent |
| spellingShingle | Emma Coen Daniel P. Judge Samantha Norman John T. Clark Andrew Cates Randolph Thornhill Kelly Hunt Lori McMahon Leslie Lenert Caitlin G. Allen Using technology to increase reach and optimize consent experience for a large-scale research program Journal of Clinical and Translational Science Consent recruitment population screening large-scale research programs enhanced consent |
| title | Using technology to increase reach and optimize consent experience for a large-scale research program |
| title_full | Using technology to increase reach and optimize consent experience for a large-scale research program |
| title_fullStr | Using technology to increase reach and optimize consent experience for a large-scale research program |
| title_full_unstemmed | Using technology to increase reach and optimize consent experience for a large-scale research program |
| title_short | Using technology to increase reach and optimize consent experience for a large-scale research program |
| title_sort | using technology to increase reach and optimize consent experience for a large scale research program |
| topic | Consent recruitment population screening large-scale research programs enhanced consent |
| url | https://www.cambridge.org/core/product/identifier/S205986612400640X/type/journal_article |
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