| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH |
|
|
|
|||||||
|
|||||||||
TRACK to:
|
|
Electronic letters published:
![[Read Comment]](/icons/misc/sectionDOWN.gif){kind=icon}
Moving Beyond Trust – Improving Racial/ethnic Participation in Clinical Research
To Trust or Not to Trust, That is the Question
|
|
|||
|
Hayden B Bosworth, Durham, USA Durham VAMC/Duke University
Send response to journal:
|
Mainous et al.’s development of a measure to assess patient trust in medical researchers is an important endeavor. The practical utility of the measure, however, needs further validation. While trust is likely to be one component of poor minority participation, it is not clear how much of an impact it actually has on participation rates. Other potentially more significant barriers to adequate minority recruitment include researchers simply not asking minorities to participate. For example, Wendler et al. performed a systematic review of 20 health research studies that reported consent rates by race or ethnicity. They found that when invited, African Americans were not less likely and occasionally were more likely to consent to research participation compared to non-Hispanic whites 1. Thus, while trust may be an issue for some individuals, a myopic view of only focusing on trust will not likely substantially improve minority recruitment. Often times, minority retention is overlooked as more attention has been devoted to minority recruitment. In many cases, it is just as important to consider minority retention rates as it is to consider enrollment rates. Logistical barriers such as transportation may be more of an issue for minorities, particularly in the realm of retention. Ensuring adequate retention rates are essential to ensure appropriate interpretation of results. There lacks understanding of enrollment and retention among Latinos, the fastest growing minority segment of the United States 2. Issues regarding enrollment and retention potentially may vary among these individuals as opposed to African Americans and non-Hispanic Whites. For example, we have reported that Latinos trusted insurance companies and government entities more often than Whites or African Americans 3. Factors related to enrollment and retention are likely to vary by race/ethnic groups. Sample recruitment and retention are fundamental to conducting clinical research. Ways to improve recruitment and retention, in general, and specifically among racial and ethnic minorities, requires involvement of community members; community involvement is of key importance to gain access to difficult-to-reach groups 4-6. In addition, to ensure adequate minority enrollment and participation, tailoring interventions based upon perceptions as proposed by Mainous 7, may be beneficial as well. For example, African Americans are more likely than Whites to believe that doctors would not inform patients of risks 8 and that patients are sometimes deceived or misled by hospitals 9. Identifying those with negative perceptions of research and providing relevant information to address these perceptions will lead to improve enrollment and retention within these racial/ethnic minorities. Identifying ways to improve participation and retention of participants in clinical trials is essential to develop methods to reduce the racial/ethnic disparities in healthcare. 1. Wendler D, Kington R, Madans J, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med 2006;3(2):e19. 2. National Population estimates, characteristics, National Demographic components of change Hispanic or Latino origin. Washington, DC: US Census Bureau, 2004. 3. Voils CI, Oddone EZ, Weinfurt KP, et al. Who trusts healthcare institutions? Results from a community-based sample. Ethn Dis 2005;15(1):97-103. 4. Parrado EA, McQuiston, C., Flippen, C. Participatory survey research: Integrating community collaboration and quantitative methods for the study of gender and HIV risks among Hispanic Migrants. Sociological Methods and Research. 2005;34(2):204-239. 5. Green L, Daniel M, Novick L. Partnerships and coalitions for community-based research. Public Health Rep 2001;116 Suppl 1:20-31. 6. Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community- based research: assessing partnership approaches to improve public health. Annu Rev Public Health 1998;19:173-202. 7. Mainous AG, 3rd, Smith DW, Geesey ME, Tilley BC. Development of a measure to assess patient trust in medical researchers. Ann Fam Med 2006;4(3):247-52. 8. Corbie-Smith G, Thomas SB, St George DM. Distrust, race, and research. Arch Intern Med 2002;162(21):2458-63. 9. LaVeist TA, Nickerson KJ, Bowie JV. Attitudes about racism, medical mistrust, and satisfaction with care among African American and white cardiac patients. Med Care Res Rev 2000;57 Suppl 1:146-61. Competing interests: None declared |
|||
|
|
|||
|
Syed M. Ahmed, Milwaukee, USA Professor and Director, Medical College of Wisconsin, 8701 Watertown Plank Road, Milwaukee, WI 53226
Send response to journal:
|
I am very excited about this article and the authors’ work in the development of this scale. They addressed an important issue of trust which dictates the participation of our patient in medical research. I have few comments which are based on my personal experience and perspectives, not on hard research data. • I am having some difficulty in finding practical applicability of this instrument in research. The authors suggested “using it to screen population of interest regarding mistrust in medical researchers.” If this scale is used as a screening tool, then what do you do if you find your target population shows high levels of mistrust? Do you change the target population? How do you tailor recruitment? Do you avoid the mistrustful patients or educate them? If you decide to educate them, then, how do you educate them if they do not trust you? • That leads to the next set of questions: Are we asking half of the right question in terms of trust? Should we use scales on researchers to find if they are trustworthy? Are there some characteristics which all different ethnic groups find more trustworthy? Should we put the focus on us and consider the reason why some patients/communities participate, while others do not? From experience, all of us have learned that “who is asking to participate in a research project” was a key factor in patients’ decision to participate. Regardless of being a mistrustful patient or not, we know successful participation may happen when a physician, researcher, or nurse who a patient trusts asks him/her to participate. • Next question is what we do when patients do not “trust” the researchers. Over the years, I have divided researchers into three categories: (1) the researchers who patients and/or community trust, (2) a large group of researchers who have some positive skills but can use more training in how to work with patients and/or community. They need and will be helped by learning about cross/trans cultural issues, bidirectional dialogue, and effective community engagement, and (3) a small group of researchers, who lack all of the above skills to a significant degree. They may not be good candidates for working with patients and/or community. My comments are made in the spirit of initiating this discussion of participation of our patients/communities in medical research. The more we address this issue of patient/community participation seriously, the better we will be off in the future. Competing interests: None declared |
|||
| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH |
TRACK: