Scientists, Students, and Crowds: A Collaboration to Improve Health Literacy

Susan M. Abdel-Rahman, Nicole McClure Kurlbaum, Stan Fernald

Abstract


Where language and literacy barriers exist, medical researchers continue to do a poor job of ensuring access to
clinical trials. Feedback from key stakeholders suggests that incorporating visual aids into the consent process can
facilitate enrollment of neglected populations. This study was initiated to examine whether a collaboration between a
teaching hospital and fine arts institution that introduced the topic of health literacy to student artists could be used to
generate medical research-related images. Crowdsourcing was used to examine the effectiveness of the illustrations
and provide students with feedback from a lay audience. Twenty-five student artists and 184 survey respondents
participated in this study. Combined positive ratings of “very” or “fairly” effective ranged from 5-91% while
negative ratings of “slightly” or “not” well ranged from 5-89%. Collaborations, as explored in this paper, can
promote minority awareness and provide a novel mechanism by which to communicate complex research-related
concepts to patients with limited literacy.


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References


Bourgeois FT, Murthy S, Ioannidis JPA, Mandl KD. Clinical Drug Trials: A Paucity of Pediatric Representation Mismatched to Global Disease Burden [abs]. PAS meeting, Boston, MA (2012).

Lang TA, White NJ, Tran HT, Farrar JJ, Day NP, Fitzpatrick R, Angus BJ, Denis E, Merson L, Cheah PY, Chilengi R, Kimuati R, Marsh K. Clinical Research in Resource-Limited Settings: Enhancing Research Capacity and Working Together to Make Trials Less Complicated. PLoS Negl Trop Dis 2010;4(6): e619

Hussain-Gambles M, Atkin K, Leese B. Why ethnic minority groups are under-represented in clinical trials: a review of the literature. Health Soc Care Community 2004;12(5):382-388

Davis S, Wright PW, Schulman SF, Hill LD, Pinkham RD, Johnson LP, Jones TW, Kellogg HB, Radke HM, Sikkema WW, Jolly PC, Hammar SP. Participants in prospective, randomized clinical trials for resected non-small cell lung cancer have improved survival compared with nonparticipants in such trials. Cancer 1985;56(7):1710–1718

Heiat A, Gross C, Krumholz H. Representation of the elderly, women, and minorities in heart failure clinical trials. Arch Int Med 2002;162(15):1682–1688

Lipton LR, Santoro N, Taylor H, Kidwai N, Isaac B, Magnani M, Pal L. Assessing comprehension of clinical research. Contemp Clin Trials 2011;32(5):608–613

Schenker Y, Wang F, Selig SJ, Ng R, Fernandez A. The impact of language barriers on documentation of informed consent at a hospital with on-site interpreter services. Journal of General Internal Medicine 2007;22(Suppl 2):294-299

Minnies D, Hawkridge T, Hanekom W, Ehrlich R, London L, Hussey G. Evaluation of the quality of informed consent in a vaccine field trial in a developing country setting. BMC Med Ethics 2008;9:15

Protection of Human Subjects – Elements of Informed Consent, 21 C.F.R. pt. 50.25 (2011)

Abdel-Rahman SM. Evaluating the Effectiveness of an Illustrated Permission/Assent Form. J Immigr Minor Health 2015;17:1504-8.

National Research Council. 2002. Responsible Research: A Systems Approach to Protecting Research Participants. Washington, DC: The National Academies Press. Pp 123-127.




DOI: https://doi.org/10.5430/wjss.v5n1p1

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World Journal of Social Science     ISSN 2329-9347 (Print)  ISSN 2329-9355 (Online)

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