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The Role of Health Literacy on African American and Hispanic/Latino Perspectives on Cancer Clinical Trials

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Abstract

Although cancer clinical trials are important for discovering lifesaving therapies, participation remains low among racial/ethnic minorities, and little research explores the role of health literacy in racial/ethnic minority perceptions of cancer clinical trials (CCTs). Five focus groups (n = 50) with African American and Hispanic participants explored CCT perceptions using a multidimensional health literacy framework. We found poor scientific literacy including misconceptions of scientific information, perceptions of clinical trials as uncertain and fear; limited civic literacy around topics of trust, perceptions of participants as guinea pigs, and concerns about of IRB protections; and cultural literacy challenges regarding the importance of home remedies for health, use of native language, and the importance of race/ethnicity matching to health care professionals. Results highlight the importance of attending to scientific literacy, cultural literacy, and civic literacy. Future educational interventions regarding cancer clinical trials should address the importance of health literacy in understanding cancer clinical trial decision making.

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Acknowledgments

This research was partially supported through grants from The Cancer Institute of New Jersey and the National Cancer Institute (P30 CA072720, K01 CA131500). We would also like to thank Olivia Wackowski, MPH, PhD at the University of Medicine and Dentistry of New Jersey–School of Public Health for her contribution on this manuscript.

Conflict of interest

The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Department of Health Education and Behavioral Science, UMDNJ–School of Public Health, 683 Hoes Lane, Piscataway, NJ, 08854, USA

    Kiameesha R. Evans, M. Jane Lewis & Shawna V. Hudson

  2. The Cancer Institute of New Jersey, UMDNJ-Robert Wood Johnson Medical School, 195 Little Albany Street, New Brunswick, NJ, 08903, USA

    Kiameesha R. Evans, M. Jane Lewis & Shawna V. Hudson

  3. Department of Family Medicine and Community Health, UMDNJ-Robert Wood Johnson Medical School, 195 Little Albany Street, New Brunswick, NJ, 08903, USA

    Shawna V. Hudson

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  1. Kiameesha R. Evans
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  2. M. Jane Lewis
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  3. Shawna V. Hudson
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Correspondence to Kiameesha R. Evans.

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Evans, K.R., Lewis, M.J. & Hudson, S.V. The Role of Health Literacy on African American and Hispanic/Latino Perspectives on Cancer Clinical Trials. J Canc Educ 27, 299–305 (2012). https://doi.org/10.1007/s13187-011-0300-5

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  • DOI: https://doi.org/10.1007/s13187-011-0300-5

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