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Informed Consent and Health Literacy: Workshop Summary (2015)

Chapter: Appendix A: Workshop Agenda

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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Informed Consent and Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/19019.
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Appendix A

Workshop Agenda

Informed Consent and Health Literacy: A Workshop

Keck Center Building, Room 100
Washington, DC
July 28, 2014

OPEN SESSION

8:30–8:45 Welcome, Workshop Overview, Introduction of First Speakers
 

George Isham, Roundtable Chair

   
8:45–10:00 Overview
   

8:45–9:05

Informed Consent: Why Do We Care?
 

Jeremy Sugarman

 

Johns Hopkins University

   

9:05–9:25

Best Practices and New Models of Health Literacy for Informed Consent: Review of the Impact of Informed Consent Regulations on Health-Literate Communications (presentation of commissioned paper)
 

Linda Aldoory

 

University of Maryland

   

9:25–10:00

Discussion
   
10:00–10:15 BREAK
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Informed Consent and Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/19019.
×
10:15–11:45 The Current State of Informed Consent in Research and Treatment
   

10:15–10:20

Introductions
   

10:20–10:40

Impact of Poor Informed Consent Process on Clinical Trials (including information sharing)
 

Sara Goldkind

   

10:40–11:00

Informed Consent and Minority Underrepresentation in Clinical Trials
 

Sandra Crouse Quinn

 

University of Maryland

   

11:00–11:20

Developing a Better Process for Informed Consent
 

Yael Schenker

 

University of Pittsburgh

   

11:20–11:40

Disproportionate Impact of Poor Informed Consent Process on Minorities
 

Alicia Fernandez

 

University of California, San Francisco

   

11:40–12:15

Discussion
   
12:15–1:15 LUNCH
   
1:15–2:30 Approaches to Informed Consent
   

1:15–1:20

Introductions
   

1:20–1:40

Importance of Conversation/Discussion as Well as the Form
 

Rebecca Sudore

 

University of California, San Francisco

   

1:40–2:10

Establishing Harmony Between the Rules and Health Literacy
 

Christopher Trudeau

 

Thomas M. Cooley Law School

   

2:10–2:45

Discussion
   
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Informed Consent and Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/19019.
×
2:45–3:00 BREAK
   
3:00–4:15 The Future of Informed Consent
   

3:00–3:05

Introductions
   

3:05–3:25

Informed Consent Using Information Technology
 

Kenneth Saag

 

University of Alabama at Birmingham

   

3:25–3:45

Initiating a Culture Change Around Informed Consent
 

Michael Paasche-Orlow

 

Boston University School of Medicine

   

3:45–4:15

Discussion
   
4:15–5:00 Reflections on the Day (Roundtable members are each asked to identify one key point from the day’s presentations.)
   
5:00–5:15 Participant Discussion
   
5:15 ADJOURN
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Informed Consent and Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/19019.
×

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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Informed Consent and Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/19019.
×
Page 105
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Informed Consent and Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/19019.
×
Page 106
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Informed Consent and Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/19019.
×
Page 107
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2015. Informed Consent and Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/19019.
×
Page 108
Next: Appendix B: Biographical Sketches of Workshop Speakers and Planning Committee Members »
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Informed consent - the process of communication between a patient or research subject and a physician or researcher that results in the explicit agreement to undergo a specific medical intervention - is an ethical concept based on the principle that all patients and research subjects should understand and agree to the potential consequences of the clinical care they receive. Regulations that govern the attainment of informed consent for treatment and research are crucial to ensuring that medical care and research are conducted in an ethical manner and with the utmost respect for individual preferences and dignity. These regulations, however, often require - or are perceived to require - that informed consent documents and related materials contain language that is beyond the comprehension level of most patients and study participants.

To explore what actions can be taken to help close the gap between what is required in the informed consent process and communicating it in a health-literate and meaningful manner to individuals, the Institute of Medicine's Roundtable on Health Literacy convened a one-day public workshop featuring presentations and discussions that examine the implications of health literacy for informed consent for both research involving human subjects and treatment of patients. Topics covered in this workshop included an overview of the ethical imperative to gain informed consent from patients and research participants, a review of the current state and best practices for informed consent in research and treatment, the connection between poor informed consent processes and minority underrepresentation in research, new approaches to informed consent that reflect principles of health literacy, and the future of informed consent in the treatment and research settings. Informed Consent and Health Literacy is the summary of the presentations and discussion of the workshop.

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