Kay Hogan Smith

Consumer Health Information Services 2.0

ABSTRACT Web 2.0 functionality is changing the way consumers search for, evaluate, and use health information. What are some of the new “Consumer Health 2.0” sites and their features? How will this trend toward participatory information processing affect traditional sites such as the National Library of Medicines MedlinePlus? How should librarians approach this new paradigm of health information-seeking? This article analyzes the current and potential environment for health information on the Internet and the role of the librarian in that environment.

HealthyME HealthyU©2010UCPGB: A Collaborative Project to Enhance Access to Health Information and Services for Individuals With Disabilities

In response to the limited information about health information and training needs among persons with disabilities, a collaborative group of Alabama researchers, educators, and clinicians was formed to implement a statewide needs assessment with support provided by the Alabama Council for Developmental Disabilities and the National Network of Libraries of Medicine. Educational and assessment activities were guided by the Systems Model of Clinical Preventive Care and Health Information National Trends Survey (HINTS) methodology. Four constructs from the 2007 HINTS Annotated Version were identified as relevant to the concepts of local interest. Results of printed and online surveys administered to 251 family and other caregivers, 87 individuals with disabilities, 110 clinical service providers, and 570 health professions students revealed outstanding health communication needs to improve access to reliable consumer information and clinical services. HealthyME HealthyU©2010UCPGB developed new educational materials that address issues identified from the needs assessment, specifically (a) accessibility of health care facilities; (b) patient–provider communication; (c) personal health management by consumers and families/caregivers; and (d) sources of trustworthy electronic health information. Six brief digital video training modules were developed for consumers, families, and professionals featuring as speakers health care providers, health professions students, and individuals with cognitive disabilities. Following field testing, video modules were revised and then widely distributed to consumers, family caregivers, and service providers. Preliminary evaluation indicates content is relevant and comprehensible to individuals with disabilities.

Aging and Health Literacy

A recent study comparing older adults’ health literacy skills with their satisfaction with health care providers’ communication efforts did not find a correlation between the two measures. However, the results were interesting, including the fact that almost 40 percent of participants experienced moderate to severe difficulties in understanding everyday health information as presented in a food label (Newest Vital Sign assessment). This has implications for senior patient engagement in health care, particularly at a time when so many health transactions such as scheduling and records requests, not to mention general health information, are moving to online only format. Librarians should be aware of the issues surrounding health literacy in older adults and work with providers to address those deficits in health care navigation in this population.

Responding to Health Information and Training Needs of Individuals with Disabilities

The role of a medical librarian includes guiding consumers to search for information related to specific health needs and interpret information for personal use. Little is known about barriers to accessing health information and clinical services for those with cognitive and physical disabilities. The purpose of this article is to describe a statewide needs assessment of the health information and services needs of individuals with disabilities and their caregivers. Data from the needs assessment conducted by the Health Services Training Project of more than 1,000 respondents indicate unmet needs for outreach to increase effective use of library and information resources. Fewer consumers and their caregivers utilized the Internet to search for health information as compared to clinical service providers and students in health professions. A majority of consumers reported difficulty obtaining and understanding online health information. Service providers and students shared concerns about information quality. Consumers and caregivers expressed highest levels of trust in information provided by service providers, nonprofit health agencies, reference books, and libraries.

The “Big Three” Consumer Health Sites and Web Technology Trends: MedlinePlus®, Healthfinder®, and CAPHIS

The increasing application of the newest Web technologies to health information sites such as Revolution Health and IndivoHealth as well as patient-focused blogs and wikis brings greater patient participation into the traditionally static equation of health information-seeking on the Internet. Health-related Web sites are currently offering features that allow consumers to interact with each other and medical professionals, display and store their medical data, and obtain current biomedical research. What do all these new developments portend for those long-standing dependable Web sites such as MedlinePlus®? This article examines the history, current status, and potential for three sites, the National Library of Medicines MedlinePlus, the Medical Library Associations Consumer and Patient Health Information Sections CAPHIS site, and Healthfinder®, in the context of the emerging importance of the newer social networking tools for consumer health information-seeking and decision making. The focus is on the inquiries produced at this transitional period of online health information. The purpose is to stimulate thought and debate.

Review of PubMed Health

ABSTRACT PubMed Health is a curated resource designed by the National Center for Biotechnology Information (NCBI) to help both researchers and lay people answer the question, “What works?” in health care. Through content provided by NCBI and numerous partner organizations (such as Cochrane Collaboration), including plain language systematic reviews as well as educational resources for those unfamiliar with evidence-based practice, consumers can understand the research behind their health care options for specific health issues. Although the reading level of some content can be challenging, PubMed Health provides easily accessible help for consumers confused by certain terms and practices described in the reviews. PubMed Health should be included in every consumer health librarian’s toolkit for users seeking to understand medical research and evidence-based health care.ABSTRACTPubMed Health is a curated resource designed by the National Center for Biotechnology Information (NCBI) to help both researchers and lay people answer the question, “What works?” in health care. Through content provided by NCBI and numerous partner organizations (such as Cochrane Collaboration), including plain language systematic reviews as well as educational resources for those unfamiliar with evidence-based practice, consumers can understand the research behind their health care options for specific health issues. Although the reading level of some content can be challenging, PubMed Health provides easily accessible help for consumers confused by certain terms and practices described in the reviews. PubMed Health should be included in every consumer health librarian’s toolkit for users seeking to understand medical research and evidence-based health care.

Review of AbleData: Tools & Technologies to Enhance Life

ABSTRACT Assistive technology (AT) can significantly enhance quality of life for people with disabilities. AbleData, produced by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR), provides comprehensive, unbiased information about a broad range of assistive technology products for use by a variety of populations with disabilities. The database search function is intuitive and simple to use, and is augmented by browsing features and indexing links. Additional helpful resources are linked from the site.

Review of Rare Diseases Resources: National Organization for Rare Disorders (NORD) Rare Disease Database, NIH Genetic and Rare Diseases Information Center, and Orphanet

ABSTRACTThis column profiles three important online resources for rare disorder information. The National Organization for Rare Disorders (NORD) Rare Disease Database set the standard for thorough, detailed monographs on rare diseases starting in the 1990s. The NORD Database is complemented by the National Institutes of Health (NIH) Genetic and Rare Diseases Information Center online and the European resource, Orphanet, both of which provide much broader coverage, if less in depth than NORD’s. Reading level for all three information sources is high, and there are occasional issues with currency. However, consumer health librarians should find these organizations’ web-based databases to be reliable sources of information on health conditions that can be perplexing for both patient and health care providers alike.ABSTRACT This column profiles three important online resources for rare disorder information. The National Organization for Rare Disorders (NORD) Rare Disease Database set the standard for thorough, detailed monographs on rare diseases starting in the 1990s. The NORD Database is complemented by the National Institutes of Health (NIH) Genetic and Rare Diseases Information Center online and the European resource, Orphanet, both of which provide much broader coverage, if less in depth than NORD’s. Reading level for all three information sources is high, and there are occasional issues with currency. However, consumer health librarians should find these organizations’ web-based databases to be reliable sources of information on health conditions that can be perplexing for both patient and health care providers alike.

Review of Health Source – Consumer Edition

ABSTRACTThe pace of publication in consumer health continues unabated. EBSCO’s Health Source – Consumer Edition provides one of the few indexing and abstracting services to assist users looking to these types of publications for help with their health questions. This column provides a guide to some of the database features and resources. While the reading level for some of its indexed sources is relatively high, and the collection of books is dated at present. Health Source – Consumer Edition remains a valuable tool in the consumer health librarian’s toolkit.ABSTRACT The pace of publication in consumer health continues unabated. EBSCO’s Health Source – Consumer Edition provides one of the few indexing and abstracting services to assist users looking to these types of publications for help with their health questions. This column provides a guide to some of the database features and resources. While the reading level for some of its indexed sources is relatively high, and the collection of books is dated at present. Health Source – Consumer Edition remains a valuable tool in the consumer health librarian’s toolkit.

Review of ConsumerLab.com: A Database of Dietary Supplements

ABSTRACT In response to consumer demand for dietary supplements as well a lack of official oversight into the quality and safety of such supplements, ConsumerLab.com provides independent testing and reviews of more than 4,000 dietary supplements and vitamins by brand name. This database of thorough and unbiased reports is available for a modest site license fee to libraries as well as a very reasonable individual membership rate.ABSTRACTIn response to consumer demand for dietary supplements as well a lack of official oversight into the quality and safety of such supplements, ConsumerLab.com provides independent testing and reviews of more than 4,000 dietary supplements and vitamins by brand name. This database of thorough and unbiased reports is available for a modest site license fee to libraries as well as a very reasonable individual membership rate.