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Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop (2020)

Chapter: 6 Reflections, Research Directions, and Potential Opportunities for Implementation

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Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
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6

Reflections, Research Directions, and Potential Opportunities for Implementation

RAPPORTEUR PRESENTATIONS

During the first half of the final session of the workshop, participants who had been designated as rapporteurs provided brief summaries of the presentations and discussions that had taken place over the preceding three sessions. The rapporteurs’ descriptions of their key takeaways were intended to stimulate discussion during the last reflections session of the workshop. Patty Spears shared her key takeaways from the day as a cancer survivor and a scientific research manager and patient advocate at the University of North Carolina Lineberger Comprehensive Cancer Center, and Consuelo H. Wilkins shared her summary and takeaways as vice president for health equity at the Vanderbilt University Medical Center and associate dean for health equity at Vanderbilt University. Wilkins also shared a brief description of her work as a co-principal investigator for the Recruitment Innovation Center (RIC). A summary of selected points highlighted by each rapporteur is provided in Box 6-1.

Recruitment Innovation Center: Opportunities to Incorporate Health Literacy Principles

Consuelo H. Wilkins, Vice President for Health Equity, Vanderbilt University

In addition to describing her key takeaways, Wilkins shared some challenges and successes she had experienced through her work at the RIC,

Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×
Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×

which serves multisite trials and is part of the Trial Innovation Network, a collaborative initiative within the National Institutes of Health Clinical Translational Science Awards program.1 A major focus of the RIC, she said, is minority recruitment, where “a fair amount of our health-literacy-related work is happening,” though she added that “health literacy” is not a frequently used term among RIC teams. One such example was a supplemental online course for clinical investigators and staff, called “Faster Together: Enhancing the Recruitment of Minorities in Clinical Trials,” which was developed with input from minority groups. The course shares strategies for recruiting racial and ethnic minorities, she added, including providing culturally tailored materials.2 Wilkins noted that the course is free and intended to help recruiters improve their minority recruitment, communicate effectively, and build relationships and trust.

The RIC also developed TrialsToday.org from ResearchMatch.org, Wilkins explained, which culls all the information available at ClinicalTrials.gov, and provides a user-friendly sorting and filtering process for potential participants to find trials for which they might be eligible. More recently, the RIC translated the website for Spanish speakers. When beginning their process, Wilkins knew that the website would need to be accessible beyond the literal translation of English to Spanish; she recommended that they lower the reading level to fourth grade before they started the translation. “In the United States,” she said, “people who are Spanish speaking, and not bilingual, typically have a lower reading level than average. We needed to lower the ResearchMatch website reading level accordingly” (Jacobson et al., 2016). She added that her team would have benefited from guidelines for adapting and translating those materials using health literacy principles. The RIC has recently developed or is currently developing several mobile apps, including MyCAP—participant-centered data capture that can be shared with investigators—and an app for clinicians to share information. Wilkins noted that she looked forward to explicitly embedding health literacy principles into her work with the RIC.

ROUNDTABLE DISCUSSION

During the remainder of the final session, some members of the Roundtable on Health Literacy identified key themes they had observed throughout the course of the day. A summary of selected observations and points made during this discussion can be found in Box 6-2.

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1 For more information about the RIC, see https://trialinnovationnetwork.org/recruitment-innovation-center (accessed October 15, 2019).

2 The course can be viewed at https://trialinnovationnetwork.org/wp-content/uploads/2019/05/Introduction-to-the-course_-Faster-Together-Enhancing-the-Recruitment-of-Minorities-in-Clinical-Trials.mp4 (accessed October 15, 2019).

Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×
Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×

Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×

Discussion

Smith observed that many barriers to clinical trial recruitment challenges had been identified over the years but was uncertain about how many had truly been addressed. He added

We don’t have a [medical] workforce that reflects minority patients culturally, historically, or racially. Until we do, we are all doing workarounds over the fact that those participants do not have physicians that they trust enough to be referred into trials without constantly fearing that they are going to be either marginalized or abused in the trials.

Smith added that he was curious about whether there would be any change with regard to the numbers of underrepresented physicians, given that the New York University School of Medicine had announced the previous summer that all students would receive full-tuition scholarships for the M.D. program.3

Dillaha asked, “How do we flip it so medical science serves people, as opposed to people serving medical science?”

Assaf wondered how to build bridges across the variety of stakeholders invested in improving patient outcomes and helping people live healthier lives by embedding health literacy into clinical trials, and how to include newer technology in such efforts.

Simonds noted that the findings discussed at the workshop should be reflected in Institutional Review Board policies, and those policies should be enforced with tools and incentives to improve the informed consent process.

Harris noted that she appreciated the diversity of speakers and experiences represented at the workshop.

Smith thanked the roundtable staff, workshop planning committee, and speakers, concluding, “This set of presentations was inspiring, informative, provocative, edgy, and convincing. I think it created a discussion that was among the best I’ve ever seen.”

REFERENCE

Jacobson, H. E., L. Hund, and F. Soto Mas. 2016. Predictors of English health literacy among U.S. Hispanic immigrants: The importance of language, bilingualism and sociolinguistic environment. Literacy and Numeracy Studies 24(1):43–64. doi: 10.5130/lns.v24i1.4900.

___________________

3 For more information about New York University’s full-tuition scholarship for medical students, see https://nyulangone.org/news/nyu-school-medicine-offers-full-tuition-scholarships-all-new-current-medical-students (accessed October 15, 2019).

Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×
Page 81
Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×
Page 82
Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×
Page 83
Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×
Page 84
Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×
Page 85
Suggested Citation:"6 Reflections, Research Directions, and Potential Opportunities for Implementation." National Academies of Sciences, Engineering, and Medicine. 2020. Health Literacy in Clinical Research: Practice and Impact: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25616.
×
Page 86
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Because of the individualized nature of drug and therapeutic treatments, clinical trials require participants who represent the diversity of the patient base. If early trials do not have a broad patient base, it can be difficult to know who may or may not benefit from or respond to a treatment later. In addition to diversity in recruitment, informed consent during participation is also crucial. If participants do not fully understand what they are signing up for, they may become confused, mistrustful, or drop out of a trial altogether, confusing investigators and possibly affecting the generalizability of a study.

To explore the incorporation of health literacy practices into clinical trials, the Roundtable on Health Literacy convened a workshop titled Clinical Trials: Practice and Impact on April 11, 2019, in Washington, DC. The workshop presentations and discussion centered around issues related to the challenges or barriers for diverse populations' participation in clinical trials, best practices for clinical trial sites and researchers incorporating health literacy practices, and effective health literacy strategies for clear communication with participants. This publication summarizes the presentation and discussion of the workshop.

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