Prelims

Half Title

Roles and Responsibilities of Libraries in Increasing Consumer Health Literacy and Reducing Health Disparities

Series Page

Advances in Librarianship

Editors

Paul T. Jaeger, University of Maryland, USA, Series Editor

Caitlin Hesser, University of Maryland, USA, Series Managing Editor

Editorial Board

Denise E. Agosto, Drexel University, USA

Wade Bishop, University of Tennessee Knoxville, USA

John Buschman, Seton Hall University, USA

Michelle Caswell, University of California Los Angeles, USA

Sandra Hughes-Hassell, University of North Carolina at Chapel Hill, USA

R. David Lankes, University of South Carolina, USA

Don Latham, Florida State University, USA

Ricardo L. Punzalan, University of Maryland, USA

Lynn Westbrook, University of Texas, USA

Title Page

Advances in Librarianship  Volume 47

Roles and Responsibilities of Libraries in Increasing Consumer Health Literacy and Reducing Health Disparities

Edited by

Beth St. Jean

College of Information Studies, University of Maryland, USA

Gagan Jindal

>College of Information Studies, University of Maryland, USA

Yuting Liao

College of Information Studies, University of Maryland, USA

Paul T. Jaeger

College of Information Studies, University of Maryland, USA

United Kingdom – North America – Japan – India – Malaysia – China

Copyright Page

First edition 2021

Copyright Chapter 2. ‘Consumer Health Literacy, the National Library of Medicine, and the Public Library: Bridging the Gaps’ © 2021 by Catherine Arnott Smith, Alla Keselman, Amanda J. Wilson and M. Nichelle Midón. Published under exclusive licence by Emerald Publishing Limited. All other chapters © 2021 Emerald Publishing Limited

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British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-83909-341-8 (Print)

ISBN: 978-1-83909-340-1 (Online)

ISBN: 978-1-83909-342-5 (Epub)

ISSN: 0065-2830 (Series)

Contents

List of Tables and Figures

Acknowledgments

We would like to thank all of the authors who have contributed their very important work to this volume, our outstanding peer reviewers (listed below), and the many other people who have helped to make this volume possible. Special thanks to Beth Barnett, RN, BSN, PhD, Board Certified Patient Advocate (BCPA) and Principal of Healthmine, LLC for her invaluable assistance and dedication to this project. We would also like to give a huge thanks to the many incredibly brave healthcare workers and essential workers that made it possible for all of us to stay well and complete our work on this volume.

Peer Reviewers:

• Rebecca Allen

  School of Education, University of Cincinnati, USA

• Steven Belenko, PhD

  Department of Criminal Justice, Temple University, USA

• Dawn Betts-Green, PhD, MLIS

  College of Communication & Information, Florida State University, USA

• Katherine Chew

  Health Sciences Libraries, University of Minnesota, USA

• Daniel Delmonaco

  School of Information, University of Michigan, USA

• Heidi Enwald

  Department of Information Studies University of Oulu, Finland

• Sasha A. Fleary, PhD

  Eliot-Pearson Department of Child Study and Human Development, Tufts University, USA

• Katie Daingerfield Fries, MPH

  South Philadelphia Library, Free Library of Philadelphia, USA

• Jane Ginsborg, PhD, BA Hons. (Psychology), BA Hons. (Music), ADipGSMD, C.Psychol., AFBPsS, FHEA, FISM

  Royal Northern College of Music, UK

• Cynthia Hughes

  Resource Discovery & Management Coe Library, University of Wyoming, USA

• Elizabeth Jarpe-Ratner, PhD, MPH, MST

  School of Public Health, University of Illinois at Chicago, USA

• Elizabeth Kiscaden, MLIS, AHIP

  National Network of Libraries of Medicine, University of Iowa,

  USA

• Stephen Kiyoi

  Shields Library, UC Davis, USA

• Noah Lenstra

  University of North Carolina Greensboro, USA

• Lili Luo

  School of Information, San Jose State University, USA

• Jinxuan (Jenny) Ma

  School of Library and Information Management, Emporia State University, USA

• Ana Ndumu, PhD

  College of Information Studies, University of Maryland, College Park, USA

• JJ Pionke, MA, MSI

  University Library, University of Illinois at Urbana–Champaign, USA

• Kevin Rioux, PhD

  St John’s University, USA

• Rachel M. Schmitz, PhD

  Department of Sociology, Oklahoma State University, USA

• Daniela Soleri, PhD

  Geography Department, UC Santa Barbara, USA

• Gregg A. Stevens, MSLS, MST, AHIP

  Stony Brook University, USA

• Christine Stilwell

  School of Social Sciences, University of KwaZulu-Natal, Pietermaritzburg Campus, South Africa

• Miriam E. Sweeney

  School of Library and Information Studies, University of Alabama, USA

• Vikki C. Terrile

  Queensborough Community College, City University of New York (CUNY), USA

• Kim M. Thompson

  School of Library and Information Science, University of South Carolina, USA

• Beth Wahler, PhD

  School of Social Work, Indiana University, USA

• Rachel D. Williams, PhD

  College of Organizational, Computational, and Information Sciences, Simmons University, USA

• Bo Xie, PhD

  School of Information, University of Texas at Austin, USA

• Yingting Zhang, MLS, AHIP

  Robert Wood Johnson Library of the Health Sciences, Rutgers, The State University of New Jersey, USA

List of Contributors

About the Contributors

Denice Adkins, MLS, PhD is an Associate Professor in the School of Information Science & Learning Technologies at the University of Missouri. She teaches in the areas of public user services, information technology, and diversity. Her research interests are in library and information services to the Latinx population, information practices in diverse populations, and overturning deficit models of thinking about non-English speaking, poor, or working-class library users and nonusers, and respecting the contributions they make to the larger community. She has been a Fulbright Scholar to the Universidad Pedagógica Nacional Francisco Morazán in Honduras and the Wildlife Institute of India in Dehra Dun. Prior to her experience in academia, she worked as a public librarian in ethnically and linguistically diverse communities in Denver, Colorado and Las Vegas, Nevada.

Beth Barnett (healthmine4@gmail.com), RN, BSN, PhD, is a Board Certified Patient Advocate (BCPA) and Principal of Healthmine, LLC. Since earning her RN in 2012, she has focused on patient care, research and policy that enable people to participate in their own health, healthcare, and quality of life. Prior to nursing, her professional careers, in program evaluation research and in technology, included many projects in health and human services and in addressing issues of disparity and digital divide. Her doctoral training in social ecological psychology provides the framework for her practice.

Joan C. Bartlett is an Associate Professor in the School of Information Studies at McGill University. She holds a PhD in Information Studies, a Master of Library Science, and a BSc in Molecular Genetics and Molecular Biology, from the University of Toronto. Her research is in the areas of information behavior, information interaction, and the impact of information use, particularly in biomedical contexts. Her current research is focused on the information behavior and information literacy of young adults in the context of health and well-being. She teaches in the areas of health sciences information, bioinformatics, and information literacy. Prior to joining McGill, she worked as a medical librarian at Mount Sinai Hospital in Toronto.

Gerd Berget is an Associate Professor at Oslo Metropolitan University, Department of Archivistics, Library and Information Science, where she conducts research and teaches classes in universal design and information retrieval. She has a Master’s degree in library and information science and a PhD in informatics. Her areas of research are human computer interaction, interactive information retrieval, and universal design. She has conducted several studies on dyslexia and developmental impairments. The overall aim of her research is to explore how to design more inclusive libraries and search user interfaces. She also has an interest in research methodologies and ethics.

Jenny Bossaller, PhD, is an Associate Professor at the School of Information Science & Learning Technologies (SISLT) at the University of Missouri – Columbia (MU). Her teaching and research focus broadly encompasses public libraries, information policy, history of libraries and information, and related social and technological phenomena. She has focused especially on the public’s access to information. She co-developed a public library leadership program with Dr Denice Adkins that emphasizes community and professional immersion and is currently leading an IMLS-funded educational program combining librarianship and community health.

Deborah H. Charbonneau is an Associate Professor in the School of Information Sciences at Wayne State University in Detroit, Michigan. She currently teaches graduate-level courses in library management, health informatics, research methods, and information policy. Her research has been funded by various government organizations and her investigations focus on how information technologies can be effective in enhancing the skills of health providers serving historically underrepresented communities. She has been an invited guest speaker to health departments, community groups, and public libraries. Her articles have appeared in Library & Information Science Research, Journal of the Medical Library Association, Health Information and Libraries Journal, Journal of Academic Librarianship, and Reference & User Services Quarterly. She is a Member of the Association for Library and Information Science Education (ALISE). Prior to joining the faculty, she held positions at the Vera P. Shiffman Medical Library at Wayne State University and the Spencer S. Eccles Health Sciences Library at the University of Utah. She completed her PhD in Sociology at Wayne State University, and she holds a Master of Library Science degree from the University of Pittsburgh.

Sarah Cooke is a Graduate Student in Library & Information Science and Women’s & Gender Studies at the University of Wisconsin-Milwaukee, where they study the relationships between queer and feminist epistemologies and knowledge organization. Sarah’s praxis has been radically informed by their time at the Queer Zine Archive Project, where they learned the value of embracing uncontrollable vocabularies.

Christine D’Arpa is an Assistant Professor at the School of Information Sciences at Wayne State University in Detroit, Michigan. She has MS and PhD from the iSchool at the University of Illinois at Urbana–Champaign. Her research focuses on the history and political economy of systems of information, public libraries and community engagement, and the history of libraries and other public information institutions. She is currently working on an IMLS National Leadership Grant, Community Health and Wellness: Small and Rural Public Library Practices, Perspectives, and Programs, with Ellen Rubenstein and Susan Burke at University of Oklahoma and Noah Lenstra at University of North Carolina at Greensboro.

Kelsey Leonard Grabeel, MSIS, AHIP, is the Assistant Director at the Health Information Center and Preston Medical Library and an Associate Professor at the University of Tennessee College of Medicine in Knoxville. She received her Master’s in Information Science from the University of Tennessee in Knoxville, and her Bachelor of Arts from the University of Mary Washington in Fredericksburg, VA. Her research interests focus on working with patients and family members to find reliable health information, advocating for patient education and health literacy, and training nursing fellows, medical students, and residents. Her primary area of interest involves editing patient education to make it easier to read for patients and family members. In addition, she co-authored the Health Literacy Environment 2 with Rima Rudd, Sandy Oelschlegel, Emily Tester, and Eric Heidel in 2019.

Baheya S. Jaber is a Doctoral Student in the School of Library and Information Studies at the University of Alabama. A native librarian from Palestine, Baheya’s research focuses on libraries in crisis, cross-cultural information management, international librarianship, and social justice in diasporic communities.

Paul T. Jaeger, PhD, JD, MLIS, MEd, is a Professor and a Diversity and Inclusion Officer of the College of Information Studies and Co-Director of the Information Policy & Access Center at the University of Maryland. He is a Co-Editor of Library Quarterly and an Associate Editor of the Advances in Librarianship book series. He has authored more than 200 journal articles and book chapters, and 18 books.

Anne M. Dannerbeck Janku, PhD, is a Consultant for the National Drug Court Institute and a Research Associate Professor in the University of Missouri School of Social Work. She spent part of her career leading the Research and Statistics Unit at the Missouri Office of State Courts Administrator. Previously, she was a Research Professor at the University of Missouri and focused on people involved with the justice system, including drug courts. She has been very involved in research and enhancing practice in drug courts for much of her career. Since 1998, she has played a lead role in evaluations of Missouri drug courts and reentry courts. She contributed to the statewide implementation of the Risk and Needs Triage tool in Missouri and has been particularly active in developing strategies to enhance equity and inclusion in drug courts. She designed the performance measures used by treatment court programs in the state. She has published numerous articles and book chapters and frequently speaks at state, national, and international conferences. Through on-site trainings and publications, she continues to encourage drug courts to adopt the best of research-based practices.

Gagan Jindal, MPH, PhD, is a qualitative user experience researcher who focuses on investigating the information behaviors of people who have chronic health conditions and developing actionable strategies to optimize their access to information to help them manage their health. Her current research examines how people who have chronic health conditions access information on health-related resources in their communities (such as group fitness or support groups) and the low-fidelity design of a health information system that would enable this population to crowdsource a repository of such information.

She holds an undergraduate degree in Sociology from the College of William and Mary, and a Master of Public Health with a focus in global and community health from George Mason University. She recently completed her PhD in Information Studies in the College of Information Studies at the University of Maryland, College Park. She has also conducted user research for several governmental, nonprofit, startup, and private organizations, such as the Office of the National Coordinator for Health Information Technology, Centers for Medicare & Medicaid Services, Facebook, CommunicateHealth, and NORC at the University of Chicago.

Alla Keselman, PhD, is a Senior Social Science Analyst in the Office of Engagement and Training, National Library of Medicine (NLM), where she specializes in health outreach and engagement evaluation of health information programs that target diverse audiences characterized by health disparities, with a focus on online information technology. She has extensive research and publication record in the areas of health information provision in non-clinical settings, including public libraries; lay understanding of complex health concepts; the relationship between scientific and health literacy; and the public’s evaluation of online health information quality. For over 10 years, she led a team developing online health educational materials, such as websites, digital games, and lesson plans, for students and teachers. Jointly with Dr Catherine Arnott Smith, she co-edited a collected volume entitled “Meeting Health Information Needs Outside of Healthcare: Opportunities and Challenges,” for which she was awarded the NLM Board of Regents Award for Scholarship. She is also, with Dr Arnott Smith, a Co-author of Consumer Health Informatics: Connecting People with Health Information, a textbook currently in press at Taylor and Francis. She holds a Doctorate in human cognition and learning and a Master’s degree in biomedical informatics from Columbia University.

Vanessa L. Kitzie, PhD, is an Assistant Professor at the University of South Carolina School of Library and Information Science. Her research and teaching interests include human information behavior (with a focus on information marginalization), gender and sexuality studies, and social justice and diversity in librarianship. She is a recipient of IMLS Early Career Development (2018) and ALA Diversity (2019) grants. Kitzie’s 2020 iConference paper, which reports on findings from her Early Career Development grant and was written with doctoral students Vera and Wagner, was nominated for the Lee Dirks Best Paper Award. She chairs the School of Library and Information Science’s Research and Doctoral committee and is on the Advocacy and Resources committee of the American Library Association’s Rainbow Roundtable.

Karina Kletscher is a Graduate Student in the Master of Library and Information Science degree program and a Research & Teaching Fellow at the University of Maryland, College Park. She is the Graduate Assistant for Teaching & Learning at the University of Maryland Libraries, where she supports information literacy programming and undergraduate research. Her research interests include critical pedagogies, information literacy, and student success. She is a proud alumna of the University of Southern California, where she completed her BA in Narrative Studies.

Joyce M. Latham has been an Associate Professor at the School of Information Studies of UWM, where her research has focused on the roots and branches of intellectual freedom within the field of LIS. This focus has led to engagement on a rosette of related topics, with the objective of empowering the individual to pursue knowledge that will support the emergence of collective goods. She lives in Urbana, IL with two retrievers and a cat who doesn’t know she is.

Noah Lenstra is an Assistant Professor of Library and Information Science at the University of North Carolina at Greensboro. He earned his PhD in Library and Information Science from the University of Illinois in 2016. In April 2020, his book Healthy Living at the Library was published by Libraries Unlimited. In 2016, he started Let’s Move in Libraries, which he continues to direct. His research on these and other topics has been published in Library Quarterly, Library & Information Science Research, Information Research, and Evidence Based Library and Information Practice, among others. His website is NoahLenstra.com and he is on Twitter @NoahLenstra.

Yuting Liao is a PhD Candidate in Information Studies at the University of Maryland, College Park. She leverages both quantitative and qualitative methods to explore human interactions with digital technology. Her studies examine the issue of privacy and how people make information disclosure decisions in various socio-technical contexts, from fitness trackers to conversational AI to online social networks. Her most recent work focuses on the design and evaluation of an anthropomorphized conversational AI for mental health support. She holds a Master’s degree in Communication, Culture & Technology from Georgetown University.

Bharat Mehra is EBSCO Endowed Chair in Social Justice and Professor in the School of Library and Information Studies at the University of Alabama. His scholarship integrates diversity and social justice in library and information science, and community informatics or the use of information and communication technologies to empower minority and underserved populations. His action research has involved racial/ethnic minorities, LGBTQ+ people, international diaspora, rural communities, small businesses, and others, to represent their experiences in the design of community-based information systems/services. He teaches courses on social justice/inclusion advocacy, diversity leadership, public libraries, collection development, grant writing, and resources for adults.

M. Nichelle Midón is a Project Scientist with the National Library of Medicine’s (NLM) Office of Engagement and Training (OET), where she works with the National Network of Libraries of Medicine (NNLM), which provides US researchers, health professionals, public health workforce, educators, and the public with equal access to biomedical and health information resources. Her previous experience includes positions at the Food and Drug Administration (FDA) Library, Carroll Hospital Center, and the National Center for Ethics in Health Care at the US Department of Veterans Affairs, Veterans Health Administration. She holds a Bachelor of Science in public health from the University of North Carolina at Chapel Hill, a Master of Science in library and information science from the Catholic University of America, and a Master of Science in instructional technology from Towson University.

Heather Brodie Perry is an Assistant Professor and a Member of the Library’s Research, Teaching and Learning team at Stonehill College in Easton, Massachusetts. At Stonehill, she teaches courses in information ethics, information technology, and the intersection of information and social policy. Her research examines how the influence of funding source shapes the type of research done, the methodologies utilized, the conclusions reached, and the dissemination channels chosen. She examines how industry funded research shapes public policy. She received her PhD from Simmons University. Her dissertation considered information literacy instruction in enhancing undergraduate understanding of the influence of funding source on research. She is excited to have the opportunity to assist users in becoming more conscious consumers of information in this challenging environment.

Loriene Roy, PhD, is Anishinabe, a Member of the Minnesota Chippewa Tribe (White Earth Reservation). She is a Professor in the School of Information at the University of Texas at Austin (UT-Austin), teaching courses on public libraries, reference, library instruction/information literacy, and access and care of indigenous cultural knowledge. She serves on boards including the board for the Library of Congress Literacy Awards. She was the President of the American Indian Library Association (AILA) (1997–1998) and of the American Library Association (ALA) (2007–2008). Her awards include the AILA 2015 Distinguished Service Award; 2014 Distinguished Alumnus Award, The University of Illinois; UH-Manoa 2014 Sarah Vann Award; 2009 Leadership Award, the Association of Tribal Archives, Libraries, and Museums; 2007 State of Texas Senate Proclamation; 2007 Library Journal Mover & Shaker; Texas Exes Teaching Awards; James W. Vick Texas Excellence Awards for Academic Advisors; and is an inaugural member of the UT-Austin Distinguished Service Academy. She has given over 600 presentations and has over 200 publications including 10 co-edited books. She is the PI for “Reaching Those Who Served: Recruiting and Preparing Military Veterans for Careers in Librarianship [Institute of Museum and Library Services RE-96-17-0018-17].

Ellen Rubenstein is an Associate Professor at the School of Information Studies at the University of Oklahoma, has an MLS from Indiana University, and a PhD from the University of Illinois. Her research focuses on access to health information, health information behavior, and public libraries. She is currently working on an IMLS National Leadership Grant, Community Health and Wellness: Small and Rural Public Library Practices, Perspectives, and Programs, with colleagues Christine D’Arpa, Noah Lenstra, and Susan Burke, which is examining how libraries support health and wellness in their communities.

Catherine Arnott Smith is a Professor at the Information School at the University of Wisconsin–Madison, teaching courses in online searching and digital health. As a patient advocate, she has served as an active member of different PFAC (Patient and Family Centered Care) committees for the University of Wisconsin Hospitals since 2008. She is an active researcher in health informatics, and was one of the developers of the Consumer Health Vocabulary (CHV), a source vocabulary of the Unified Medical Language System and the only open-source vocabulary available for consumer and patient-centered terminology. An early collaborator with researchers at the online patient community PatientsLikeMe, she has co-authored numerous studies of consumer health vocabulary published in top medical informatics journals. Her principal research focus has been to isolate and explore the actual language used by consumers, who need to describe health concepts as they interact with information systems through search engines and personal health record interfaces. She is interested in interactions of consumers with clinical information systems, documents, and vocabularies in all kinds of spaces, from patient portals to Web-based bulletin boards, public libraries, archives, and college disability student services.

Beth St. Jean, PhD, MSI (Library & Information Services), is an Associate Professor in the College of Information Studies (https://ischool.umd.edu/), the Associate Director of the Information Policy and Access Center (iPAC) (http://ipac.umd.edu/), and an Affiliate Faculty Member of the Horowitz Center for Health Literacy (http://sph.umd.edu/center/hchl) at the University of Maryland, College Park, USA (https://www.umd.edu/). Dr St Jean’s research sits at the intersection of consumer health information behavior and consumer health information justice (CHIJ), particularly aiming to identify the information-related causes of, and potential solution pathways to, health disparities.

Rachel Thudium, MLS, is a Graduate of the University of Missouri’s School of Information Science and Learning Technology. Her career in research began in the field of biology where she worked for several years in aquatic studies relating to freshwater algae and invertebrates. A life-long learner, she has received a BA in English Literature and Philosophy and later used her skills in communication to work in fundraising. She chose the field of librarianship to combine her interests in research, people, and technology. She has taught courses on information literacy and has worked in various fields of librarianship including academic, public, and archives. She is currently serving as Interim Executive Assistant to Dean Henry in the College of Veterinary Medicine at the University of Missouri–Columbia. This position allows her to utilize her technological background from her graduate program and her skills in research.

Emily Vardell is an Assistant Professor at the School of Library and Information Management at Emporia State University. She teaches classes on the foundations of library and information science, research methods, reference, consumer health, and health sciences librarianship. Her research interests are in the area of health information behavior with a focus on health insurance literacy and how people make health insurance decisions. She completed her PhD in the School of Information and Library Science (SILS) at the University of North Carolina at Chapel Hill. Prior to returning for her doctoral studies, she was the Director for Reference and Education at the Louis Calder Medical Library at the University of Miami. She earned her Masters of Library Science from Texas Woman’s University in 2007 as a distance education student while working as a Fulbright Scholar in Austria. She began her medical librarian career as a National Library of Medicine Associate Fellow. She is an active member of the Medical Library Association (MLA) and serves as the Online Updates Column Editor for Medical Reference Services Quarterly. Her first book The Medical Library Association Guide to Answering Questions about the Affordable Care Act was published by Rowman & Littlefield.

Alexander Nicolas Vera is a third-year Doctoral Student in the School of Library and Information Science at the University of South Carolina. He received his Master’s in Library and Information Science from the University of South Carolina. His work and research efforts are focused on understanding the relationship between self-efficacy, information seeking behaviors, and health outcomes of rural and underserved communities in South Carolina, allowing his research to inform future health initiatives and programs that advocate for less-visible groups in South Carolina.

Travis L. Wagner is a PhD Candidate in the School of Library and Information Science at the University of South Carolina. Wagner is also an instructor in USC’s Women’s and Gender Studies Department. Wagner’s primary research interests include critical information studies, queer archives, and social advocacy in libraries. Wagner recent publications include articles in Reference Services Review and Open Information Science. Wagner is also the co-creator of the Queer Cola Oral History and Digital Archive.

Amanda J. Wilson is the Chief of the National Library of Medicine’s (NLM) Office of Engagement and Training (OET). The office brings together the general engagement, training, and other outreach staff from across the library working on national and international engagement, training, and capacity-building programs for the Library. OET also coordinates the National Network of Libraries of Medicine (NNLM), which provides US researchers, health professionals, public health workforce, educators, and the public with equal access to biomedical and health information resources and data. She came to NLM in 2017 as Head, National Network Coordinating Office. From December 2006 to January 2017, she served as the Director, National Transportation Library (NTL), an all-digital library focusing on building collections, data curation, increasing awareness of NTL collections and services, and coordinating the national network of transportation libraries. She has previous experience at The Ohio State University Libraries as a Metadata Librarian. She is also an Adjunct Professor at The Catholic University of America Department of Library and Information Science.