Relevance of health literacy to precision medicine : proceedings of a workshop / Joe Alper, rapporteur ; Roundtable on Health Literacy, Board on Population Health and Public Health Practice, Health and Medicine Division, the National Academies of Sciences, Engineering, Medicine.

Includes bibliographical references.

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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This activity was supported by contracts between the National Academy of Sciences and AbbVie Incorporated; the Aetna Foundation; the Agency for Healthcare Research and Quality (HHSP23337024); American Dental Association; Bristol-Myers Squibb; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Missouri; Health Literacy Partners; Health Resources and Services Administration (HHSH25034011T); Humana; Institute for Healthcare Advancement; Merck and Company, Incorporated; National Institutes of Health (HHSN26300054); National Library of Medicine; Northwell Health; Office of Disease Prevention and Health Promotion (HHSP23337043); and UnitedHealth Group. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

Introduction -- Genetic literacy -- The intersection of health literacy and precision medicine -- Health liteacy in precision medicine research -- Communicating risk and uncertainty in the clinical setting -- Communicating with the public -- Reflections on the day -- References -- Appendix A: Workshop agenda -- Appendix B: Biographical sketches of workshop speakers, moderators, and reactors.