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Suggested Citation:"Appendix A: Workshop Agenda." 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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Appendix A

Workshop Agenda

THURSDAY, APRIL 11, 2019

7:45–8:15 AM REGISTRATION
8:30–8:40 AM WELCOME AND WORKSHOP OVERVIEW
Lawrence G. Smith, Roundtable on Health Literacy
8:40–10:00 AM SESSION 1: HEALTH LITERACY IS AN ETHICAL IMPERATIVE IN CLINICAL TRIALS
Suggested Citation:"Appendix A: Workshop Agenda." 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.
×
8:40–9:00 AM Keynote 1: Why Health Literacy Matters
Barbara E. Bierer, Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard
9:00–9:20 AM Keynote 2: How Health Literacy Helps Patients Make Decisions
Deborah Collyar, Patient Advocates in Research
9:20–10:00 AM Moderated Discussion
Moderator: Larry G. Smith
10:00–10:15 AM BREAK
10:15 AM–12:15 PM SESSION 2: EMBEDDING HEALTH LITERACY INTO CLINICAL TRIALS FROM THE BEGINNING OF THE PROCESS TO IMPROVE RECRUITMENT AND RETENTION
10:15–11:30 AM Presentations and Panelist Discussion

Ebony Boulware, Duke University School of Medicine

Catina O’Leary, Health Literacy Media

Alicia Staley, Medidata Solutions

Christopher R. Trudeau, University of Arkansas Medical School and Bowen School of Law, University of Arkansas at Little Rock

Moderator: Annlouise R. Assaf, Pfizer Worldwide Medical and Safety

11:30 AM–12:15 PM Discussion
12:15–1:15 PM BREAK
1:15–2:45 PM SESSION 3: EXPERIENCES IN IMPLEMENTING HEALTH LITERACY IN CLINICAL TRIALS
1:15–2:00 PM Presentations

Connie Arnold, Louisiana State University Health Sciences Center

Suggested Citation:"Appendix A: Workshop Agenda." 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.
×

Lauren McCormack, Public Health Research, RTI International

Saira Z. Sheikh, University of North Carolina School of Medicine

2:00–2:45 PM Moderated Discussion

Moderator: Phyllis J. Pettit Nassi, Huntsman Cancer Institute

2:45–3:00 PM BREAK
3:00–4:30 PM SESSION 4: WHAT DOES THE FUTURE HOLD FOR DESIGNING CLINICAL TRIALS USING HEALTH LITERACY BEST PRACTICES?
3:00–4:00 PM Moderated Panel Discussion

Emma Andrews, Pfizer Biopharmaceuticals Group

Monika Mitra, Brandeis University

Jovonni R. Spinner, Office of Minority Health, U.S. Food and Drug Administration

Rebecca J. Williams, ClinicalTrials.gov

Moderator: Terry C. Davis, Louisiana State University Health Sciences Center

4:00–4:30 PM Discussion
4:30–4:50 PM SESSION 5: WORKSHOP HIGHLIGHTS

Patty Spears, University of North Carolina Lineberger Comprehensive Cancer Center

Consuelo H. Wilkins, Vanderbilt University Medical Center

4:50–5:30 PM SESSION 6: ROUNDTABLE REFLECTIONS ON THE DAY

Moderator: Lawrence G. Smith

5:30 PM ADJOURN
Suggested Citation:"Appendix A: Workshop Agenda." 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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Suggested Citation:"Appendix A: Workshop Agenda." 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 87
Suggested Citation:"Appendix A: Workshop Agenda." 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 88
Suggested Citation:"Appendix A: Workshop Agenda." 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 89
Suggested Citation:"Appendix A: Workshop Agenda." 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 90
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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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