archives@tulane.edu / Clinical trials are often seen as the gold standard by which the medical community judges the effectiveness of new medications, treatment options, and
preventative strategies. When surveyed, around 80% of the general population seems willing to participate in clinical trials if they are offered the opportunity; yet only around 3-5% of adults actually participate, with minority participation often even lower. This gap between initial willingness and actual enrollment has not been well studied, but the barriers to enrollment have been. The most common barriers to enrollment are: a lack of enrollment opportunities, a lack of knowledge about clinical trials, fear of side effects, and a distrust of medical research.
This project attempted to address three of the most common barriers of clinical trial enrollment (lack of knowledge, distrust of clinical trials, lack of enrollment opportunities) as well as better understand the gap between willing to enroll and actual enrollment. Interviews with participants were conducted to see if a video explaining clinical trials could improve knowledge and comfort, and registry patients were tracked throughout the enrollment workflow to see where drop off occurs as well as to see if offering enrollment opportunities to everyone would increase enrollment and decrease racial disparities in enrollment.
Overwhelmingly patients believed that resources like the video increased their knowledge, understanding, and comfort of clinical trials and should be shown to patients considering clinical trials. If a shorter version was developed, it should cover risks, benefits, the ability to withdraw at any time, and what a clinical trial is. Furthermore, the relationship between the caregiver and the patient is of utmost importance. In tracking patients throughout the enrollment workflow, around 29% did not even engage when given the opportunity and 22% had very little engagement. Furthermore, large drop-offs were seen whenever patients had to enter personal information about themselves. Strong efforts should be made to capture patients attention at the onset in order to motivate individuals to complete the workflow and increase enrollment rates. Furthermore, while only 3% of participants ended up enrolling in our study, when the opportunity to enroll was offered to everyone, African Americans enrolled at the same rates as their White counterparts. Future studies should be sure to offer equitable enrollment in order to ensure adequate enrollment of minority groups that tend to be underrepresented in clinical trials. / 1 / Cannon Ledford
| Identifer | oai:union.ndltd.org:TULANE/oai:http://digitallibrary.tulane.edu/:tulane_106639 |
| Date | January 2019 |
| Contributors | Ledford, Edward (author), Seal, David (Thesis advisor), School of Public Health & Tropical Medicine Global Community Health and Behavioral Sciences (Degree granting institution) |
| Publisher | Tulane University |
| Source Sets | Tulane University |
| Language | English |
| Detected Language | English |
| Type | Text |
| Format | electronic, pages: 156 |
| Rights | No embargo, Copyright is in accordance with U.S. Copyright law. |
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