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Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Appendix A

Workshop Agenda

Roundtable on Health Literacy

Relevance of Health Literacy to Precision Medicine: A Workshop March 2, 2016

Open Session

8:30-8:40 a.m. Welcome and Workshop Overview

Bernard Rosof, M.D., Chair, Roundtable on Health Literacy

8:40-9:00 a.m.

Communication from the Genomic Era to Precision Medicine

Joseph D. McInerney, M.A., M.S.

Executive Vice President

American Society of Human Genetics

9:00-10:30 a.m.

The Intersection of Health Literacy and Precision Medicine

9:00-9:05

Introduction of speakers

Ruth Parker, M.D. (moderator)

Professor of Medicine, Pediatrics, and Public Health

Emory University School of Medicine

9:05-9:20

What is precision medicine and how has it evolved over time?

Sara Van Driest, M.D., Ph.D.

Assistant Professor of Pediatrics

Vanderbilt University School of Medicine

Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

9:20-9:35

What is health literacy and how has it evolved over time?

William Elwood, Ph.D.

Office of Behavioral and Social Sciences Research National Institutes of Health

9:35-9:50

Issues at the intersection of precision medicine and health literacy?

Michael S. Wolf, Ph.D., M.A., M.P.H.

Professor, Medicine and Learning Sciences

Feinberg School of Medicine

Northwestern University

9:50-10:30

Discussion (to include McInerney)

10:30-10:45 a.m.

BREAK

10:45 a.m.-12:30 p.m.

Health Literacy in Precision Medicine Research

10:45-10:50

Introduction of speakers

Laurie Myers, M.B.A. (moderator)

Global Health Literacy Director

Merck & Co., Inc.

10:50-11:05

Recruitment and messages (include privacy and informed consent)

Suzanne Bakken, R.N., Ph.D.

Alumni Professor of Nursing and

Professor of Biomedical Informatics

Columbia University

11:05-11:20

Engagement and retention

Consuelo Wilkins, M.D., MSCI

Executive Director

Meharry–Vanderbilt Alliance

11:20-11:35

Results reporting

Paul S. Appelbaum, M.D.

Elizabeth K. Dollard Professor of Psychiatry, Medicine, and Law

Director, Division of Law, Ethics, and Psychiatry Columbia University

Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

11:35-11:45

Reactions

Health Literacy Reactor:

Marin P. Allen, Ph.D.

National Institutes of Health

Precision Medicine Reactor:

Benjamin Solomon

Inova Translational Medicine Institute

11:45-12:30

Discussion

12:30-1:30 p.m.

LUNCH

1:30-3:00 p.m.

Communicating Risk and Uncertainty in the Clinical Setting

1:30-1:35

Introduction of speakers

Laurie Francis, M.P.H. (moderator)

Senior Director of Clinic Operations and Quality Oregon Primary Care Association

1:35-1:50

Communicating for understanding

Lori Erby, Ph.D.

Associate Program Director

Johns Hopkins University/

National Human Genome Research Institute Genetic Counseling Training Program

1:50-2:05

Communicating risk to low health literacy populations

Jessica Ancker, Ph.D.

Associate Professor of Healthcare Policy and Research

Weill Cornell Medical College

2:05-2:15

Reactions

Health Literacy Reactor:

Terry Davis, Ph.D.

Louisiana State University Health Sciences Center

Precision Medicine Reactor:

Cathy Wicklund, M.S.

Feinberg School of Medicine

Northwestern University

Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

2:15-3:00

Discussion

3:00-3:15 p.m.

BREAK

3:15-4:45 p.m.

Communicating with the Public

3:15-3:20

Introduction of speakers

Catina O’Leary, Ph.D., LMSW (moderator)

President and CEO

Health Literacy Missouri

3:20-3:35

The role of health associations

Kathleen Hickey, Ed.D., FNP, ANP, FAHA, FAAN

Associate Professor of Nursing

Columbia University Medical Center

3:35-3:50

Precision medicine in social media

Chris Gunter, Ph.D.

Director of Communication Operations

Children’s Healthcare of Atlanta’s

Marcus Autism Center

3:50-4:00

Reactions

Health Literacy Reactor:

Jennifer Dillaha, M.D.

Arkansas Department of Health

Precision Medicine Reactor:

Carla Easter, Ph.D.

National Human Genome Research Institute

National Institutes of Health

4:00-4:45

Discussion

4:45-5:30 p.m.

Reflections on the Day

5:30 p.m.

ADJOURN

Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 89
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 90
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 91
Suggested Citation:"Appendix A: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 92
Next: Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors »
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On January 20, 2015, President Obama announced the Precision Medicine Initiative (PMI) in his State of the Union address. The PMI, by developing new approaches for detecting, measuring, and analyzing a wide range of biomedical information including molecular, genomic, cellular, clinical, behavioral, physiological, and environmental parameters, is intended to enable a new era of medicine in which researchers, providers, and patients work together to develop individualized care. Part of this effort included the creation of a national, large-scale research participant group, or cohort. The PMI Cohort Program is aimed at extending precision medicine to many diseases, including both rare and common diseases such as diabetes, heart disease, Alzheimer’s disease, obesity, and mental illnesses such as depression, bipolar disorder, and schizophrenia, by building a national research cohort of 1 million or more U.S. participants.

An important challenge to assembling the PMI Cohort will be to reach individuals who are socioeconomically disadvantaged. Individuals who are socioeconomically disadvantaged have lower health literacy; often belong to racial, ethnic, and minority communities; and are often less likely to participate in research studies and biorepositories. To explore possible strategies and messaging designs, the Roundtable on Health Literacy formed an ad hoc committee charged with planning and conducting a 1-day public workshop on the intersection of health literacy and precision medicine. The workshop participants discussed a variety of topics including an overview of precision medicine and its potential, the relevance of health literacy to the success of precision medicine efforts, and perspectives and understanding of different groups, such as health care providers, consumers, and insurers. This publication summarizes the presentations and discussions from the workshop.

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