Catherine Arnott Smith

“The Easier-To-Use Version”: Public Librarian Awareness of Consumer Health Resources from the National Library of Medicine

The public library needs to be understood as a source of consumer health information. Although medical librarians have extended outreach to their public counterparts for years, few detailed evaluations of the effectiveness of this outreach have been published, and the skill sets and knowledge gaps in the public library community are undocumented. This paper reports the results of a large interview study in which 102 library workers, professional and paraprofessional, were asked about their awareness of consumer health information resources.

Beyond Readability: Investigating Coherence of Clinical Text for Consumers

Background A basic tenet of consumer health informatics is that understandable health resources empower the public. Text comprehension holds great promise for helping to characterize consumer problems in understanding health texts. The need for efficient ways to assess consumer-oriented health texts and the availability of computationally supported tools led us to explore the effect of various text characteristics on readers’ understanding of health texts, as well as to develop novel approaches to assessing these characteristics. Objective The goal of this study was to compare the impact of two different approaches to enhancing readability, and three interventions, on individuals’ comprehension of short, complex passages of health text. Methods Participants were 80 university staff, faculty, or students. Each participant was asked to “retell” the content of two health texts: one a clinical trial in the domain of diabetes mellitus, and the other typical Visit Notes. These texts were transformed for the intervention arms of the study. Two interventions provided terminology support via (1) standard dictionary or (2) contextualized vocabulary definitions. The third intervention provided coherence improvement. We assessed participants’ comprehension of the clinical texts through propositional analysis, an open-ended questionnaire, and analysis of the number of errors made. Results For the clinical trial text, the effect of text condition was not significant in any of the comparisons, suggesting no differences in recall, despite the varying levels of support (P = .84). For the Visit Note, however, the difference in the median total propositions recalled between the Coherent and the (Original + Dictionary) conditions was significant (P = .04). This suggests that participants in the Coherent condition recalled more of the original Visit Notes content than did participants in the Original and the Dictionary conditions combined. However, no difference was seen between (Original + Dictionary) and Vocabulary (P = .36) nor Coherent and Vocabulary (P = .62). No statistically significant effect of any document transformation was found either in the open-ended questionnaire (clinical trial: P = .86, Visit Note: P = .20) or in the error rate (clinical trial: P = .47, Visit Note: P = .25). However, post hoc power analysis suggested that increasing the sample size by approximately 6 participants per condition would result in a significant difference for the Visit Note, but not for the clinical trial text. Conclusions Statistically, the results of this study attest that improving coherence has a small effect on consumer comprehension of clinical text, but the task is extremely labor intensive and not scalable. Further research is needed using texts from more diverse clinical domains and more heterogeneous participants, including actual patients. Since comprehensibility of clinical text appears difficult to automate, informatics support tools may most productively support the health care professionals tasked with making clinical information understandable to patients.

Knowledge Gaps Among Public Librarians Seeking Vaccination Information: A Qualitative Study

Public libraries have been called the “first responders” to the specialized health information needs of the general public. The challenges inherent in consumer health information (CHI) service are centered around the Patron, the Librarian, the Information Resources, and the Library itself. The pilot study involved interviews with nine individual library workers in eight public libraries in four library systems: the District of Columbia, Montgomery and Prince Georges Counties in Maryland, and Fairfax County in Virginia. Library workers were asked about common consumer health information requests, the nature of their collections, and the role of public libraries in meeting these information needs. The subjects were also presented with a hypothetical scenario, and their responses suggest knowledge gaps. The findings point to the increasing necessity and importance of training and support for public librarians, as well as the importance of understanding where the medical knowledge gaps exist. Public librarians need to commit to formal evaluation of their skill sets and knowledge gaps, in order to identify areas to which libraries can devote limited resources.

Information retrieval in medicine: The electronic medical record as a new domain

“The medical record is a material form of public memory,” Berg (1996) writes, “a structured distributing and collecting device, where all tasks concerning a patient’s trajectory must begin and end...” [Italics original; p. 510]. Structured distributing and collecting devices are the natural interest of information science. Unfortunately, of the 130 articles published about medicine in almost 36 years of JASIST, although 70 (54%) deal with information retrieval, communication and the work processes behind them, only 2 of these articles (1.5%) have focused on the medical record. The body of existing information retrieval work most relevant to the medical record as a base for experiment is the work called “passage retrieval” defined as “the task of identifying and extracting fragments from large, or short but heterogeneous full text documents” (Melucci, 1998, p. 44). This paper presents a document-centered approach to the EHR as an information retrieval problem. It is clear that passage retrieval researchers working in the field of information science have seen similar values in document passages as have researchers in medical informatics. Without either literature acknowledging the other, workers in both camps have identified the same potential in document structure, labels, specificity and explicit hierarchies of knowledge for signaling relevance to the reader. The National Health Information Infrastructure Initiative (http://aspe.hhs.gov/sp/nhii/) identifies academics and researchers as natural stakeholders, like clinicians and caregivers, in enabling better healthcare through better information sharing (National Committee on Vital and Health Statistics, 2003). Information science has much to contribute to the health information technology arena and to electronic health records in particular: their development, their maintenance, and most importantly their improvement to serve the needs of diverse users.

Introduction to the Go Local Special Issue

This introduction presents the dominant themes of this special issue dedicated to “Lessons Learned” from the Go Local projects. Recurring topics from the published literature about Go Local, from the Journal of Consumer Health on the Internet and other periodicals, are reviewed.

Evaluating the Quality of Health Information in a Changing Digital Ecosystem (Preprint)

Background Critical evaluation of online health information has always been central to consumer health informatics. However, with the emergence of new Web media platforms and the ubiquity of social media, the issue has taken on a new dimension and urgency. At the same time, many established existing information quality evaluation guidelines address information characteristics other than the content (eg, authority and currency), target information creators rather than users as their main audience, or do not address information presented via novel Web technologies. Objective The aim of this formative study was to (1) develop a methodological approach for analyzing health-related Web pages and (2) apply it to a set of relevant Web pages. Methods This qualitative study analyzed 25 type 2 diabetes pages, which were derived from the results of a Google search with the keywords “diabetes,” “reversal,” and “natural.” The coding scheme, developed via a combination of theory- and data-driven approaches, includes 5 categories from existing guidelines (resource type, information authority, validity of background information sources, objectivity, and currency) and 7 novel categories (treatment or reversal method, promises and certainty, criticisms of establishment, emotional appeal, vocabulary, rhetoric and presentation, and use of science in argumentation). The coding involves both categorical judgment and in-depth narrative characterization. On establishing satisfactory level of agreement on the narrative coding, the team coded the complete dataset of 25 pages. Results The results set included “traditional” static pages, videos, and digitized versions of printed newspapers or magazine articles. Treatments proposed by the pages included a mixture of conventional evidence-based treatments (eg, healthy balanced diet exercise) and unconventional treatments (eg, dietary supplements, optimizing gut flora). Most pages either promised or strongly implied high likelihood of complete recovery. Pages varied greatly with respect to the authors’ stated background and credentials as well as the information sources they referenced or mentioned. The majority included criticisms of the traditional health care establishment. Many sold commercial products ranging from dietary supplements to books. The pages frequently used colloquial language. A significant number included emotional personal anecdotes, made positive mentions of the word cure, and included references to nature as a positive healing force. Most pages presented some biological explanations of their proposed treatments. Some of the explanations involved the level of complexity well beyond the level of an educated layperson. Conclusions Both traditional and data-driven categories of codes used in this work yielded insights about the resources and highlighted challenges faced by their users. This exploratory study underscores the challenges of consumer health information seeking and the importance of developing support tools that would help users seek, evaluate, and analyze information in the changing digital ecosystem.

Healthcare in a Virtual Environment: Workload and Simulation Sickness in a 3D CAVE

Much of patient care takes places in patients’ homes, but we do know very little about how patients deal with their health and chronic illness condition(s) while at home and how the physical environment can have an impact on their care. In this study, we focus on patients’ management of their personal health information management (PHIM) in the home.

Examining Disability Counselors’ Health Information Use and Evaluation

ABSTRACT This study employs qualitative analysis of interviews with 17 disability counselors to examine their health information behavior by identifying which health information sources they use, what their criteria are, and whether they consulted librarians for assistance. The results indicate that disability counselors rely on the Internet, colleagues, and print materials to facilitate disability services for students. The author, recommendations from colleagues, and comparison of content were identified as the primary methods for determining the credibility of health information sources. The findings provide insight into how disability counselors use health information sources and determine their credibility when assisting students with their accommodations needs.

MD-CTS: An integrated terminology reference of clinical and translational medicine.

New vocabularies are rapidly evolving in the literature relative to the practice of clinical medicine and translational research. To provide integrated access to new terms, we developed a mobile and desktop online reference—Marshfield Dictionary of Clinical and Translational Science (MD-CTS). It is the first public resource that comprehensively integrates Wiktionary (word definition), BioPortal (ontology), Wiki (image reference), and Medline abstract (word usage) information. MD-CTS is accessible at http://spellchecker.mfldclin.edu/. The website provides a broadened capacity for the wider clinical and translational science community to keep pace with newly emerging scientific vocabulary. An initial evaluation using 63 randomly selected biomedical words suggests that online references generally provided better coverage (73%-95%) than paper-based dictionaries (57–71%).

Medical information for the consumer before the World Wide Web

Abstract This chapter reviews the literature of professional librarianship between 1879 and 1993 to identify the dominant themes of medical information provision to the general public before the World Wide Web. The themes are organized into four dimensions: Libraries as organizations and institutions (what are the optimal library types for medical information provision? what access policies should be in place?); Librarians (what interpersonal challenges arise over medical information provision, and what roles are appropriate for the librarian providing it?); Patrons (what are their motivations for seeking medical information, and what demands does this place on staff time in libraries? will patrons self-diagnose with the information they are given? what are their expectations of the librarian who assists them?); and Content (what are the special problems of medical terminology? how does the library maintain a quality collection for different audiences? what books are “bad” versus actively harmful?). One surprising finding is that the often-expressed fear by librarians that they can be sued over provision of health information turns out to be more modern than expected, documented in the literature no earlier than 1978. However, for the most part, these challenges are timeless and have little to do with the medium or the technology involved in delivering the information. Rather, they are the result of longstanding sensitivities and fears on the part of libraries as institutions and librarians and patrons as human beings.