A
Data Sources and Methods

In order to respond to the study charge, several steps were undertaken to define the scope of the problem of limited health literacy, identify obstacles to creating a health-literate public, assess the approaches that have been attempted, and identify goals for health literacy efforts. Sources of data and information included the expertise of the committee members, literature reviews and Internet searches of principal concepts, informal interviews, commissioned works, hosting of several public workshops, and other invited presentations.

STUDY COMMITTEE

An 11-member study committee was convened to assess available data and respond to the study charge. The committee included members with expertise in public health, primary medical care, health communication, sociology, anthropology, adult literacy education, and K-12 education. The committee convened for six 2-day meetings on October 21–22, 2002; December 10–11, 2002; February 13–14, 2003; April 29–30, 2003; June 16–17, 2003; and September 11–12, 2003. Biographies of individual committee members appear in Appendix D.

LITERATURE REVIEW

The committee conducted extensive literature reviews and Internet searches regarding health literacy and related topics. The literature reviewed



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Health Literacy: A Prescription to End Confusion A Data Sources and Methods In order to respond to the study charge, several steps were undertaken to define the scope of the problem of limited health literacy, identify obstacles to creating a health-literate public, assess the approaches that have been attempted, and identify goals for health literacy efforts. Sources of data and information included the expertise of the committee members, literature reviews and Internet searches of principal concepts, informal interviews, commissioned works, hosting of several public workshops, and other invited presentations. STUDY COMMITTEE An 11-member study committee was convened to assess available data and respond to the study charge. The committee included members with expertise in public health, primary medical care, health communication, sociology, anthropology, adult literacy education, and K-12 education. The committee convened for six 2-day meetings on October 21–22, 2002; December 10–11, 2002; February 13–14, 2003; April 29–30, 2003; June 16–17, 2003; and September 11–12, 2003. Biographies of individual committee members appear in Appendix D. LITERATURE REVIEW The committee conducted extensive literature reviews and Internet searches regarding health literacy and related topics. The literature reviewed

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Health Literacy: A Prescription to End Confusion in this report represents diverse fields and academic disciplines. In particular, Institute of Medicine (IOM) staff used in-house databases, including Academic Premier Search, Medline, ERIC,1 PsychInfo, Sociological Abstracts, and CINAHL2 to identify relevant peer-reviewed literature. Keyword searches include the following: “health literacy,” “literacy and health,” and “reading and health.” Additional studies for consideration were identified through testimony to the committee by experts in the field. PUBLIC WORKSHOPS The study committee hosted three 1-day public workshops in order to obtain input from various stakeholders, consumers, and researchers. These workshops were held in conjunction with three of the six committee meetings mentioned above. The first public workshop of the committee was held on December 10–11, 2002 in Washington, DC. This workshop focused on health literacy-related activities in federal government agencies, academia, and other relevant organizations. Michael Pignone, M.D., M.P.H., Assistant Professor of Medicine at the University of North Carolina, Chapel Hill, School of Medicine, presented information about an ongoing research project sponsored by the Agency for Health Care Research and Quality intended to review the evidence base of health literacy research. Arlene S. Bierman, M.D., M.S., from the Center of Outcomes and Effectiveness Research, Agency for Healthcare Research and Quality, spoke about health disparities and health literacy. Lawrence J. Fine, M.D., Dr. P.H., of the Office of Behavioral and Social Science Research at the National Institutes of Health, discussed how health literacy relates to other areas in health such as health disparities, behavioral change, and socioeconomic determinants of health such as education. Cynthia Baur, Ph.D., of the U.S. Department of Health and Human Services, spoke about federal involvement in health literacy efforts and how to leverage existing work that is relevant to the field. Anthony Tirone, J.D., from the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), discussed some of the work of JCAHO that has implications for how health systems respond to health literacy. Marisa Scala, M.G.S., from the Center for Medicare Education of the American Association of Homes and Services for the Aging, talked about the specific needs of the Medicare population as they relate to health literacy. Karen Lechter, J.D., Ph.D., from the Center for Drug Evaluation and Research of the U.S. Food and Drug Administration (FDA) provided an 1   Educational Resources Information Center. 2   Cumulative Index to Nursing and Allied Health Literature.

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Health Literacy: A Prescription to End Confusion overview of the activities of the FDA and their relevance to health literacy. Lauren Schwartz, M.P.H., from the New York City Poison Control Center shared background about and lessons from a program educating adult learners about medications. Linda Morse, R.N., M.A., from the New Jersey Office of Academic and Professional Standards discussed current activity in the educational sector to improve health literacy, including efforts specific to New Jersey, such as the New Jersey Core Curriculum Content Standards for Comprehensive Health and Physical Education, which are currently being implemented. Judy A. Shea, Ph.D., from the University of Pennsylvania School of Medicine, shared findings about a recent research project looking at the interplay between health literacy and patient satisfaction with different modes of health-related communication. Finally, Tina Tucker, M.A., M.Ed., RTC, from the National Program in Literacy, American Foundation for the Blind, discussed the health needs and desires of individuals who are visually impaired and low literate. The agenda for this workshop is shown in Box A-1. The third meeting of the committee was held on February 13–14, 2003, at the Arnold and Mabel Beckman Center of the National Academies in Irvine, California, and a public workshop was held in conjunction with this meeting. On the afternoon of February 13, the committee heard from representatives of consumer and advocacy groups, as well as several experts in the areas of literacy, communication, and chronic diseases. Dean Schillinger, M.D., from the University of California–San Francisco spoke about the relationships between care for patients with chronic diseases, health literacy, and quality of care, with a specific emphasis on the role of patient– physician communication in determining quality of care. Tetine Sentell, M.A., of the University of California–Berkeley presented new analyses of data from the National Adult Literary Survey. Susan M. Shinagawa, from the Asian and Pacific Islander National Cancer Survivors Network, and Heng L. Foong, of the Pacific Asian Language Services for Health, highlighted the most critical health literacy issues facing Asian Americans and Pacific Islanders today, with an emphasis on issues of health and doctor– patient communication in populations with limited English that represent native speakers of diverse languages. Rita Hargrave, M.D., of the University of California–Davis and Veterans Medical Center of Northern California, discussed mental health care, ethnicity, and health literacy, and the influence of physician and patient communication styles and preferences. Alvin Billie, of the Family Learning Center and the Gathering Place in New Mexico, discussed the unique health literacy issues facing Native Americans, and addressed the effect of large cultural differences on doctor– patient communication, as well as approaches to the problems created by these cultural differences. Francis Prado and Francisco Para, from Latino Health Access based in Santa Ana, California, described health literacy

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Health Literacy: A Prescription to End Confusion BOX A-1 First Workshop Hosted by the Committee on Health Literacy Date: December 10–11, 2003 Location: Keck Center of the National Academies 500 5th Street, NW Washington, D.C. December 10, 2003 1:00 p.m. Report from the AHRQ Evidence-Based Practice Center Report on Health Literacy Michael Pignone, M.D., M.P.H. Assistant Professor of Medicine, University of North Carolina at Chapel Hill School of Medicine 1:20 p.m. Health Literacy and Health Disparities: Assessing Health Outcomes and Quality of Care Arlene S. Bierman, M.D., M.S. Senior Research Physician, Center of Outcomes and Effectiveness Research, Agency for Healthcare Research and Quality 1:50 p.m. Education Pathways to Health: Health Literacy Lawrence J. Fine, M.D., Dr.Ph., Medical Advisor Office of Behavioral and Social Science Research, National Institutes of Health 2:00 p.m. The Federal Sector and Health Literacy Cynthia Baur, Ph.D. Health Communication and e-Health Advisor, U.S. Department of Health and Human Services 2:30 p.m. Activities of the Joint Commission to Improve Health Literacy Anthony Tirone, J.D. Director of Federal Relations, Joint Commission on Accreditation of Healthcare Organizations 3:00 p.m. Break challenges in Latin American populations based on their experiences as community health workers, emphasizing how the different experiences of patients and doctors affect the meaning in their communication, resulting in less effective health care. The agenda for this meeting is presented in Box A-2. At the fourth meeting of the committee, a public workshop was held with representatives of health-care system organizations and consumer groups, as well as experts on the research base on health literacy and on the legal issues surrounding health literacy. This workshop took place on April

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Health Literacy: A Prescription to End Confusion 3:15 p.m. Linking Health Literacy and Medicare Education Marisa Scala, M.G.S. Executive Director, Center for Medicare Education, American Association of Homes and Services for the Aging 3:45 p.m. Patient Information Activities at the FDA Karen Lechter, J.D., Ph.D. Social Science Analyst, Center for Drug Evaluation and Research, U.S. Food and Drug Administration 4:15 p.m. General Discussion and Public Comment 5:00 p.m. Adjourn December 11, 2003 8:30 a.m. Health Education Literacy Program: A Medicine Safety Program for Adult Learners Lauren Schwartz, M.P.H. Community Health Educator, New York City Poison Control Center 9:15 a.m. Improving Health Literacy: An Educational Response to a Public Health Problem Linda Morse Director, New Jersey Office of Academic and Professional Standards 10:00 a.m. Development of Patient Satisfaction Survey Materials for Low-Literacy Consumers Judy A. Shea University of Pennsylvania School of Medicine 10:45 a.m. Health Management Solutions for Adults Who Are Visually Impaired and Have Low Literacy Skills Tina Tucker American Foundation for the Blind 11:30 a.m. Discussion 12:30 a.m. Adjourn 29, 2003, at the Keck Center of the National Academies in Washington, DC. Michael Pignone, Ph.D., of the University of North Carolina at Chapel Hill presented updated information about an ongoing study on the health literacy research database sponsored by the Agency for Healthcare Research and Quality. Julie Hudman, Ph.D., from the Kaiser Commission on Medicaid and the Uninsured of the Henry J. Kaiser Family Foundation spoke about the health literacy issues confronting Medicaid and low-income individuals. Joanne Schwartzberg, M.D., of the American Medical Association (AMA), discussed the ongoing efforts of the AMA to educate

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Health Literacy: A Prescription to End Confusion BOX A-2 Second Workshop Hosted by the Committee on Health Literacy Date: February 13, 2003 Location: Arnold and Mabel Beckman Center of the National Academies, Irvine, CA 3:00 p.m. Literacy and Chronic Disease Care: New Research Insights and Reflections on Quality Standards Dean Schillinger, M.D. Associate Professor of Medicine, University of California–San Francisco, San Francisco General Hospital Medical Center 3:45 p.m. Relationships Between Literacy, Race, Age, Education, and Health in a National Sample: An Extension of NALS Analyses Tetine Sentell, M.A. Ph.D. Candidate, University of California, Berkeley 4:00 p.m. Health Literacy Concerns for Asian Americans & Pacific Islanders: Challenges and Opportunities Susan M. Shinagawa Patient Advocate and Founder, Asian and Pacific Islander National Cancer Survivors Network     Heng L. Foong Patient Advocate and Program Director, Pacific Asian Language Services for Health 4:15 p.m. The Interplay of Ethnicity and Health Literacy in Mental Healthcare Rita Hargrave, M.D. Assistant Professor of Psychiatry, Department of Psychiatry, University of California, Davis, Veterans Medical Center of Northern California System of Clinics 4:30 p.m. Health and Literacy—A Native American Point of View Alvin Billie Program Manager, The Gathering Place, Thoreau, NM 4:45 p.m. Health Care Barriers in the Latino Community of Orange County Francis Prado, Francisco Para Health Educators and Promotoras, Latino Health Access 5:00 p.m. Discussion 5:30 p.m. Adjourn health professionals about health literacy. Frank M. McClellan, J.D., a professor at the Temple University James E. Beasley School of Law, provided background on the legal precendents and legal and ethical implications of health literacy and informed consent. Joyce Dubow, M.U.P., of

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Health Literacy: A Prescription to End Confusion BOX A-3 Third Workshop Hosted by the Committee on Health Literacy Date: April 29, 2003 Location: Keck Center of the National Academies, Washington, DC 2:00 p.m. Understanding the Medicaid and Low-Income Population: Implications for Health Literacy Julie Hudman, Ph.D. Associate Director, Kaiser Commission on Medicaid and the Uninsured, Henry J. Kaiser Family Foundation 2:30 p.m. Low Health Literacy: Increasing Physician Awareness of an Emerging Issue Joanne Schwartzberg, M.D. Director of Aging and Community Health, American Medical Association 3:00 p.m. Legal Implications of Health Literacy Frank M. McClellan, J.D. I. Herman Stern Professor of Law, Temple University James E. Beasley School of Law 3:30 p.m. Break 3:45 p.m. Health Literacy Among Medicare Beneficiaries Joyce Dubow, M.U.P. Senior Policy Advisor, Public Policy Institute, AARP 4:15 p.m. African Americans and Health Literacy L. Natalie Carroll, M.D. President, National Medical Association 4:45 p.m. Health Literacy and the Midwestern Latino Community Eduardo Crespi, R.N. Executive Director, Centro Latino de Salud, Columbia, MO 5:15 p.m. Discussion 5:45 p.m. Adjourn AARP, spoke about health literacy issues related to Medicare beneficiaries. L. Natalie Carroll, M.D., of the National Medical Association, presented information on African Americans and health literacy, and described the positions and efforts of the National Medical Association in the area. Finally, Eduardo Crespi, R.N., from Centro Latino de Salud in Missouri, discussed health literacy needs of the Latin American population served by Centro Latino, and described some of the programs available to address those needs. The agenda for this workshop is presented in Box A-3.

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Health Literacy: A Prescription to End Confusion COMMISSIONED PAPERS AND BACKGROUND INFORMATION The committee commissioned several papers and research projects in order to fill gaps in the available evidence base. Three of the papers can be found in Appendix B, and input from other consultants has been integrated into the report. The committee commissioned work from Terry Davis of Louisiana State University, Julie Gazmararian of Emory University, David H. Howard of Emory University, Frank McClellan of Temple University School of Law, Dean Schillinger of University of California–San Francisco, and Barry D. Weiss of the University of Arizona College of Medicine. Davis and Gazmararian collaborated to examine some promising approaches to health literacy; background and methodology of their work is discussed further below. Howard was commissioned to look at the economic implications of limited health literacy in a Medicare population. His paper is included in Appendix B, and provides important information for the discussion in Chapter 3 concerning the associations of limited health literacy. McClellan spoke to the committee and provided information about legal issues that are important to consider with health literacy. This information provides the basis for the section on health law that appears in Chapter 6. Schillinger examined chronic disease care for patients with limited health literacy from a health systems perspective. His work on informed consent is cited in Chapter 6, and can be found in Appendix B. Weiss provided a piece considering the different stakeholders in the health literacy discussion; this work can also be found in Appendix B. This section presents the methodology used for two of the research activities commissioned by the committee from outside consultants that are not separately presented in a paper: (1) a review of approaches to health literacy not found in the published literature, and (2) a compilation of the federal funding for health literacy projects over the past 10 years. Approaches to Improving Health Literacy: Lessons from the Field The committee commissioned a project from Terry Davis, M.D., Louisiana State University Health Sciences Center, and Julie Gazmararian, Ph.D., Emory University, to look at approaches to improving health literacy that are currently being used and may not be reflected in the peer-reviewed literature. Findings from this project are discussed in Chapter 6. Drs. Davis and Gazmararian, and IOM staff, identified key individuals or organizations that should be contacted to inquire about health literacy activities in which they were involved. The selection process was not intended to result in a complete survey of approaches to health literacy, but rather to identify a sample of key organizations that could make a difference in the field of health literacy. The types of organizations that were targeted included fed-

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Health Literacy: A Prescription to End Confusion eral and state government agencies, pharmaceutical companies, national organizations, foundations, and local service providers. IOM staff identified a contact person to respond from each organization. Individuals identified for possible participation in the survey were those who were aware of health literacy. We also decided to elicit information on health literacy activities from the National Institute for Literacy (NIFL)-health listserv (see www.nifl.govformoreinformation). Terry Davis and Julie Gazmararian developed a 5-minute, 15-question, web-based survey to send to selected individuals. This instrument was developed on the basis of a previous survey by the Council of State Governments to assess health literacy activities at the state level (Matthews and Sewell, 2002). Information collected included: whether health literacy is considered in program development and service activities; the degree to which organizations follow health literacy principles in their programs; target audience(s) for activities; whether organizations pilot test materials for comprehension or cultural competence; evaluation of materials; which activities people associate with health literacy and lessons learned. The Internet service www.zoomerang.com was used to create the web-based survey because it provides low-cost, web-based survey implementation tools. IOM staff sent an e-mail message with a web link to the original list of 101 individuals identified, and to the NIFL-health listserv, which has 568 members. The survey was open for 10 days. No follow-up reminders were sent to the designated individuals or the listserv. Figure A-1 outlines the response to the survey. Of the 101 individuals e-mailed, 7 e-mails were undeliverable, leaving 94 individuals directly contacted. Including respondents from the listserv, we received completed surveys from 95 individuals; 33 of these were from the initial list of individuals, and 62 were from the listserv. FIGURE A-1 Response to web-based survey.

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Health Literacy: A Prescription to End Confusion Respondents came from state and federal government agencies, associations, foundations, health-care organizations, institutes of higher education, community/advocacy groups, adult education programs, and literacy businesses (see Table A-1). TABLE A-1 Summary of Respondents and Nonrespondents to Survey E-mailed Survey Respondents NIFL Listserv Respondents Asian American Network for Cancer Awareness, Research and Training American Academy of Family Physicians Foundation American Academy of Neurology American Medical Association Agency for Toxic Substances and Disease Registry (CDC) California HealthCare Foundation California Literacy, Inc. Center for Medicare Education Centers for Disease Control and Prevention Centro Latino de Salud Food and Drug Administration Martinez VA Outpatient Clinic Mettger Communications National Cancer Institute National Program Office, Hablamos Juntos National Cancer Institute’s Cancer Information Service of New York National Institute on Deafness and Other Communication Disorders (NIH) New York City Poison Control Center Pfizer, Inc. The Gathering Place U.S. Department of Health and Human Services U.S. Food and Drug Administration, Los Angeles District University of North Texas Health Science Center University of Virginia School of Medicine American Institutes for Research American Society on Aging Ball Memorial Family Practice Residency Blue Cross Blue Shield of Michigan Bronson Healthcare Group Brown University, Center for Environmental Studies Butler University–College of Pharmacy Cambridge Health Alliance Centers for Disease Control and Center for Health Care Strategies Prevention CHOICE Regional Health Network Clear Language Group Dartmouth-Hitchcock Medical Center Eastern Massachusetts Literacy Council EasyRead Copywriting Emory University School of Medicine/ Grady Hospital En Memphis, Hablamos Juntos Environmental Toxicology Program, Maine Bureau of Health Family Health Research Georgia Department of Technical & Adult Education Hablamos Juntos Harris School of Nursing, Texas Christian University Health Literacy Center, University of New England Health Literacy Consulting Home Health VNA Health Resources and Services Administration Inova Health System Kootenai Medical Center Medical Library Literacy Assistance Center Literacy Volunteers of Santa Fe

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Health Literacy: A Prescription to End Confusion E-mailed Survey Respondents NIFL Listserv Respondents   Massachusetts Department of Public Health Mayfield Adult Basic and Literacy Education Molina Healthcare, Inc. National Alliance for the Mentally Ill (NAMI) National Institutes of Health National Marrow Donor Program National Cancer Institute—Office of Education and Special Initiatives Neighborhood Health Plan of Rhode Island National Institute of Neurological Disorders and Stroke (NIH) New York City Department of Health and Mental Hygiene Parma Adult Basic and Literacy Education Queens Library Rancho Los Amigos National Rehabilitation Center Saint Eugene Medical Center Santa Clara Valley Medical Center Section of Patient Education Mayo Clinic Rochester Southwest Washington Medical Center St. Joseph Regional Health Center Temple University Health System The Catholic University of America School of Nursing The Ohio State University The Robert Wood Johnson Foundation University of Texas University of North Carolina School of Medicine University of Pennsylvania University of South Carolina School of Medicine University of Tennessee Extension Service University of Texas Health Science Center Virginia Adult Learning Resource Center Vision Literacy Wayne State University NOTE: The same organization can be found in different categories because separate individuals may or may not have completed the survey.

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Health Literacy: A Prescription to End Confusion Federal Funding for Health Literacy over a 10-Year Period Patrick Weld, M.S.W., M.P.A., L.G.S.W., of the National Cancer Institute (NCI), with the assistance of K. Vish Visnawath, Ph.D., also of NCI, provided the committee with a table of federal funding of health literacy-related projects over the past 10 years. The data were derived from a search of the NIH CRISP database; searches for each fiscal year from 1993 to 2002 used the following operands: “health literacy,” “health and literacy,” “health and readability,” and “literacy and readability.” The grants retrieved were examined for relevance to the field of health literacy, and financial information was obtained. Results were then downloaded into Portfolio Management Application software developed by Department of Cancer Control and Population Science of the National Institutes of Health for identification and deletion of duplicate grants, and linkage to financial data. A total of 906 grants for the 10-year period were identified. Because of a technology change in 1995–1996, 229 of the grants could not be linked to financial data. Thus, the early years of the search results (1993–1996) contain missing financial data. While Drs. Weld and Viswanath were able to identify all of the missing grants, further work to access the financial data for those grants was not successful. The information for the remaining 667 grants available was downloaded into an Excel spreadsheet for further manipulation. The awarded grants were identified, and unawarded grants were excluded, bringing the final count of grants to 565. This information has been compiled into yearly federal grant funding (new and continuing grants) over a 10-year period, and is presented in Chapter 6. REFERENCE Matthews TL, Sewell JC. 2002. State Official’s Guide to Health Literacy. Lexington, KY: The Council of State Governments.