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CONSUMER HEALTH INFORMATION

This guide links to websites for educational resources on consumer health issues: Academic site, consumer guides, directories, a glossary, health information provided by the federal government, and professional associations/organizations.  Also included are two Johnson & Wales University Library databases.

Utilization of these sites will allow the user to do the following: Learn about a wide variety of illnesses/medical conditions; compare evaluative data on hospitals/medical centers; understand medical insurance/advance planning/personal health records/patient advocacy issues; evaluate content from medical websites; understand health-related federal programs, resources and services (FirstGov “gateway” for consumer information, additional resources from specific agencies); review guides/resources sponsored by professional associations/organizations; analyze information on health issues in states and access state health resources.


America’s Best Hospitals 2007

•  Ranks 173“medical centers” in 16 categories of treatment specialization (cancer, pediatrics, heart ailments, etc.)
•  Uses comparative data to rank top hospitals for these specialties; criteria includes reputation, hospital- wide mortality ratio, nurse/patient index, patient/community services, “key technologies”
•  Also links to additional information for a limited number of medical conditions/illnesses including diabetes, digestive disorders, respiratory illnesses, other health problems
•  Excellent; extensive, but not comprehensive; one of the most popular resources for comparative information on many of the nation’s best, most prestigious hospitals/ medical centers


American Hospital Directory (AHD)

•   “Provides online data for over 6,000 hospitals”
•   “Information is built from both public and private sources including Medicare claims data (MedPAR and OPPS), hospital cost reports and other public use files”
•   Each hospital profile includes the following: “Identification and Characteristics” (contact information, facility type, type of control, number of beds, patient statistics), clinical services, accreditation, trauma program status, teaching status, financial statistics
•   Includes definitions/methodology of criteria utilized to compile statistics and related data
•   Also includes “Hospital Statistics by State”
•   Searchable by hospital name, keyword, zip code, telephone area code
•   Information discussed above is free-of-charge; subscribers to AHD’s services are able to access additional, in-depth information (including advanced search features, departmental statistics, financial reports, contacts, more detailed inpatient/outpatient data)
•   Outstanding resource for hospital profiles and comparative data


CAPHIS Top 100 List

•   Maintained by the Consumer and Patient Health Information Section (CAPHIS) of the Medical Library Association (MLA)
•   “Our goal is to have a limited number of resources that meet the quality criteria for currency, credibility, content, audience, etc.”
•   Directory of health/medical websites for the following: general health, women’s health, men’s health, parenting/kids, seniors, “specific health problems,”, drug information, “professional” links, “other useful health sites”
•   Excellent annotations accompany each link
•   Searchable
•   Outstanding; originally created as a reference resource for librarians, this site contains much useful information that should be useful to consumers as well


Centers for Disease Control and Prevention (CDC)

•   “The lead federal agency for protecting the health and safety of people – at home and abroad, the CDC is an affiliate of the U.S. Department of Health and Human Services (HHS)”
•   CDC’s ten “National Centers” and two “Offices” research and implement policy for such areas as birth defects/developmental disabilities, environmental health, infectious diseases, injury protection/safety, related concerns
•   Maintains constantly updated alerts/”fact sheets”/news releases regarding epidemics, related public health problems; includes “Traveler’s Health,” “Public Emergency and Preparedness”
•   “Health Topics A to Z” is a browsable directory of links to over 400 health topics/issues relating to environmental health, foodborne illnesses, communicable diseases, bioterrorism; many of these topics/issues are subdivided into sub-topics and include links to CDC-produced research and publications
•   Includes information regarding CDC’s initiatives, products, programs, projects, publications
•   Many resources on this page are available in Spanish
•   Outstanding; best official source for any information/updates on epidemics (bird flu, West Nile Virus); over-all excellence for much health information for consumers


Consumer Guide to Handling Disputes with Your Employer or Private Health Plan

•   Sponsored by the Henry J. Kaiser Family Foundation and the Consumers Union
•   Guide to understanding and resolving disputes relating to health insurance plans
•   Covers the following: “Know Your Coverage,” “Appealing to Your Health Plan,” “Getting an Independent External Review in Your State,” “How Consumers Fared Under Review Programs,” “State-by-State External Review Plans”
•   August 2005 Report
•   Excellent, timely review of this consumer health care issue; very well-presented in language understandable to the layperson


Consumer Health Publications

•   Maintained by Employee Benefits Security Administration, U.S. Department of Labor
•   “Consumer Health Publications” covers workers’ rights in regards to health benefits for the following topics: health benefits under COBRA, employer bankruptcy and healthcare coverage, portability of healthcare benefits, retirees and health insurance retention, job loss and healthcare benefits, women’s healthcare rights and the Cancer Rights Act of 1998, related issues
•   Each publication examines the issue at hand, outlines procedures for dealing with the issue, and describes available resources for successful resolution of the issue
•   “Compliance Assistance - Health Publications” documents procedures and regulations for employers dealing with healthcare benefits issues
•   Most publications are also available in Spanish
•   Also includes sections on employee pension benefit rights, employer compliance with pension laws/regulations
•   Excellent; the best resource for federal laws/regulations regarding employee health benefits


Consumer Health Resources

•   Maintained by Healthnet: Connecticut Consumer Health Information Network, Lyman Maynard Stowe Library, University of Connecticut Health Center
•   Directory of links to directory/meta indexes, “special categories” for professionals (journals, full-text publications, news), “Subject Specific Sites”
•   “Subject Specific Sites” links to over 110 sites for 27 health/medical topics, including diseases/conditions, population-specific information (children, disabled persons, men, minorities, travelers, women), nutrition/diet, patient advocacy, clinical trials, drugs/prescriptions
•   Short annotations accompany each link
•   Also includes “Evaluating Web Sites for Consumer Health Information”
•   Excellent; not exhaustive, but one of the best general “gateways” for beginning research


Consumer’s Tool Kit for Health Care Advance Planning

•   Sponsored by the Commission on Law and Aging, American Bar Association
•   “This toolkit contains a variety of self-help worksheets, suggestions, and resources,” but “… does not create a formal advance directive for you,” although it “…helps you do the much harder job of discovering, clarifying and communicating what is important to you in the face of serious illness”
•   Examines the legal, ethical, and practical procedures/ ramifications of such issues as health care proxies, “after death decisions to think about now,” “spiritual values important to your medical decisions,” organ donation decisions, related issues
•   “Resources” includes links to relevant associations/organizations, guides/handbooks, “Advance Directive Forms of Special Interest”
•   Excellent, practical resource for dealing with this consumer healthcare issue


FirstGov for Consumers: Health

•   Health sub-page of FirstGov for Consumers, “the federal government’s gateway to consumer information”
•   Directory of health-related sites for the following topics: aging/elder care, consumer education, insurance, diseases/medical conditions, drugs, women’s health issues, personal care (weight control, fitness, health risk assessment, mental health, nutrition)
•   Also links to advice/information from federal health agencies, news (“In the Spotlight”)
•   Outstanding; one of the most widely-used health websites, and rightly so; designed with consumers in mind, it’s an excellent place to begin research


Health and Medical Information

•   Maintained by the University of Colorado Libraries, Boulder
•   Links to over 30 websites for health-oriented federal agencies, programs, projects
•   Each link is accompanied by a concise, incisive annotation
•   Excellent; not extensive, but a great place to connect to some of the most popular federal health sites


Health & Wellness Resource Center

•   Restricted to the Johnson & Wales University Community
•   Also available through “Databases” on http://library.jwu.edu/
•   Comprehensive database for “… all levels of health research”
•   “More than 900 health/medical journals, newsletters and hundreds of pamphlets (more than 75% of which appear in full text)”
•   “Health-related articles from 2,200 general interest publications”
•   “Quick Start” allows targeted searches in the following HWRC resource areas: “Medical Encyclopedia,” “Drug Finder,” “Health Assessment Tools,” “Health Organization Directory,” “Medical Dictionary,” “Health News”
•   Continuously updated
•   Outstanding resource for beginning research on specific conditions/illnesses, healthcare trends, related information


Health Reference Center – Academic

•   Restricted to the Johnson & Wales University Community
•   Also available through “Databases” on http://library.jwu.edu/
•   Utilizes over 700 sources from medical journals, general-interest magazines, reference books, “topical overviews,” and pamphlets to provide information on a wide-ranging variety of specific conditions/illness and related healthcare issues
•   Information may be retrieved for both article citations and full-text articles; searches may also be customized by date range and limited to specific journals/magazines (currently includes over 2.6 million articles)
•   Articles retrieved by subject searches may be narrowed by sub-topic; when relevant, topics may be linked to “Related Subjects”
•   Continuously updated
•   Outstanding; one of the most comprehensive resources for health-related articles for consumers and practitioners


HEALTHINFOQUEST

•   Maintained by the National Network of Libraries of Medicine (NN/LM), National Institutes of Health (NIH), U.S. Department of Health and Human Services (HHS)
•   Presents pathfinders for the following categories: cancer, diseases/disorders/conditions, health care providers, health statistics, medical/assistive devices, health news, prescription drugs/diet supplements, procedures/therapeutic options, support/discussion groups, terminology, tests
•   Pathfinders discuss “tips” and procedures for conducting research on the categories listed above: instructions/strategies are very clearly written and should be useful for the layman
•   Includes advice on using “gateway” medical websites (MEDLINEplus, Healthfinder, PubMed, MeSH, HealthWorldOnline) and on evaluating health/medical websites
•   Target audience is public librarians and consumers who are interested in this topic
•   Excellent resource for beginning research on specific types of health/medical information


Managed Care and Healthcare Terminology

•   Maintained by Pamela Pohly, healthcare analyst/consultant
•   Glossary of several hundred “… commonly used terms in the medical provider, hospital and managed care industries”
•   Searchable
•   Printed copies available for sale
•   Outstanding; this is an excellent glossary of many of the terms which often appear in guides and documents that address healthcare management issues


Medicaid Resource Book

•   Sponsored by the Kaiser Family Foundation
•   “Written to assist the public and policymakers in understanding the structure and operation of the Medicaid program,” this is a full-text, dowloadable book which covers Medicaid eligibility, benefits, financing, and administration
•   Includes information for population-specific groups (children, low-income families, people with disabilities)
•   Also includes appendices, which include the legislative history of the program, indexes to statutes/regulations, “selected resources”
•   Outstanding; this is one of the best and most comprehensive resources for understanding and utilizing the Medicaid program


Medical Resources Information for the Consumer

•   Authored by Caryl Gray, librarian at Virginia Polytechnic Institute and State University
•   Published in the December 2000 issue of College & Research Library News; updated in May 2007
•   Well-organized Internet guide which links to sites for the following: meta-sites, “gateways,” associations for specific diseases/conditions, professional associations/organizations, government sites
•   Excellent annotations accompany each link
•   Outstanding; while not extensive, this is one of the best short guides to consumer-oriented health/medical websites; a great place to begin research


Medicare: The Official U.S. Government Site for People with Medicare

•   Sponsored by the U.S. Department of Health and Human Services
•   Official site for Medicare information for beneficiaries, professionals/providers
•   Provides information on eligibility/enrollment, claims/appeals, billing, long-term care
•   “Search Tools” provides comparison data for the following services: prescription drug programs, hospitals, home health agencies, health plan options, nursing homes, dialysis facilities
•   Best official site; well-designed and easy-to-navigate


myPHR.com – My Personal Health Record

•   “Provided as a free public service by the American Health Information Management Association (AHIMA)”
•   Explains the advantages of creating a personal health record for providing accuracy in personal medical information and guidance for families and healthcare professionals in clarifying treatment options
•   Covers the following issues/procedures: creating a personal health record, use of information by providers, your “health information rights” and “privacy rights,” provisions of the Health Insurance Portability and Accountability Act (HIPAA)
•   Includes downloadable health record forms
•   Outstanding; a practical, consumer-oriented guide/toolkit for understanding and dealing with this complex, important aspect of personal healthcare issues


Navigating the Health Care System: A Resource Guide for Consumers

•   Compiled by Judith Kronick, Lyman Maynard Stowe Library, University of Connecticut Health Center
•   “This guide is intended to assist patients and their families who are selecting health care providers and insurance coverage and want to gather background information to help them in the decision-making process”
•   This site is a directory of annotated websites and print resources for evaluating the following : physicians, hospitals, health insurance, Medicare, managed care plans, long-term care, end of life decisions, privacy rights
•   Print resources may be found in academic libraries or public libraries
•   Emphasis is on Connecticut resources, but includes much useful information for anyone interested in utilizing the U.S. healthcare system to his/her best advantage
•   Complements “Patient Advocacy Resources: A Guide for Patients and Their Families”
•   Outstanding; there has been great interest in this topic in recent years; this is one of the best guides, since very well-organized and the research tips it offers are useful to the layperson


Patient Advocacy Resources: A Guide for Patients and Their Families

•   Compiled by Lynda Grayson, Lyman Maynard Stowe Library, University of Connecticut Health Center
•   “This resource guide has been created to assist consumers in become advocates for their own health”
•   Directory of annotated websites and print resources for the following topics/issues: patient advocacy, self-help groups, medical records, patient rights/privacy, informed consent, children’s health issues, women’s health issues, end-of-life decisions
•   Print resources may be found in academic libraries or public libraries
•   Emphasis is on Connecticut Resources, but includes much information for anyone interested in utilizing the U.S. healthcare system to his/her advantage
•   Complements “Navigating the Health Care System: A Resource Guide for Consumers”
•   Outstanding; this is one of best guides of its kind, since it’s very well-organized and the research tips it offers are useful to the layman


Quackwatch

•   Maintained by Stephen Barrett, M.D.
•   “A nonprofit corporation whose purpose is to combat health-related frauds; … primary focus is on quackery-related information that is difficult or impossible to get elsewhere”
•   Links to information on over 100 sites which investigate “Questionable Products, Services, and Theories”
•   Includes advice on “consumer strategy” for analyzing questionable health promotions, dealing with misleading advertising
•   Free newsletters available
•   “Updated several times a week”
•   Searchable
•   Portions of the site are available in French, German, Portuguese, and Spanish
•   Links to additional “Watch” sites operated by Barrett for specific conditions/diseases
•   Includes information on site’s advisory board, funding sources
•   Outstanding; this is one of the best sites for keeping track of dubious information on health/medical issues


Rhode Island Department of Health (RIDH)

•   Home page for the Rhode Island state agency which oversees and regulates the provision of health care for the state
•   Provides information regarding advisories/updates for healthcare providers, licensee verification, licensing boards/professions, programs/services, healthcare facilities regulation, statistics
•   Includes information on RIDH’s health assessment/monitoring/screening programs for a variety of health problems, with an emphasis on family health
•   “Health Topics A-Z” indexes links to online information for over 300 health issues including specific conditions/illnesses, environmental concerns, product safety alerts, insurance issues; resources includes RIDH’s publications/surveys, federal publications/resources
•   “Emergency Information” available in Spanish, Portuguese, Chinese, French, Cambodian, Hmong, Laotian
•   Outstanding; this excellent site is a very user-friendly resource for consumers/general public as well as healthcare professionals


Right to Know – Hazardous Substance Fact Sheets

•   Maintained by the New Jersey Department of Health and Senior Services
•   Huge database of over 1,000 “fact sheets” on hazardous chemicals/substances
•   Each “fact sheet” includes the following: common name of substance, “hazard summary,” identification, determination of exposure/workplace exposure limits, methods of reducing exposure, protection equipment requirements, emergency information (handling/storage, first aid precautions)”
•   “Not intended to be copied and sold for commercial purposes”
•   Updated “regularly”; e-mail site update notification available
•   Much of the site’s content is available in Spanish
•   Download in Adobe PDF format
•   Outstanding resource for information on the most dangerous substances/toxins


Statehealthfacts.org

•   “Statehealthfact.org is a project of the Henry J. Kaiser Family Foundation and is designed to provide free, up-to-date, and easy-to-use health data on all 50 states; … provides data on nearly 400 health, health care, and health policy topics”
•   “50 State Comparisons” allows the user to compare data for the following 11 categories: demographics and the economy, health status, health coverage and the uninsured, Medicaid/SCHIP, Medicare, health costs/budgets, managed care/health insurance, providers/service use, minority health, women’s health, HIV/AIDS
•   Each category contains in-depth statistical information, compiled from “original Kaiser Family Foundation reports, public websites and data, and information purchased from private organizations”
•    “Individual State Profiles” provide single-state data for each of the 11 categories in “50 State Comparisons”; also links to a state’s health department Medicaid agency, executive office, legislature, congressional delegation
•   U.S. health data profile included
•   “Tools” provide access to fact sheets, complete list of topics, glossary, “related reports,” FAQ, publications
•   Outstanding; the best resource for consumers to determine the condition of healthcare in their state


StatePublicHealth.org

•   Sponsored by the Robert Wood Johnson Foundation, National Governors Association, Association of State and Territorial Health Officials
•   “Dedicated to promoting sound public health policy and providing answers for questions about communicable diseases”
•   Directory of state public health departments and state public officials
•   Includes links to state public health “hotlines,” additional contact information
•   “Resources” links to professional associations/organizations, federal public health websites, news
•   “State Comparisons” provides data on a state’s medical facilities, resources, consumer demographics; allows for comparison between states
•   Excellent; great place for locating a state’s public health agencies and resources


Trust for America’s Health (TFAH)

•   “A non-profit, non-partisan organization dedicated to saving lives by protecting the health of every community and working to make disease prevention a national priority”
•    “Founded by the Benjamin Spencer Fund; … receives generous support from a number of foundations and individual champions for improved public health”
•   Browsable by state for the following: disease clusters, birth defect tracking, cancer mapping data, state’s viability regarding health tracking in general, reports on lead hazards, air pollution, land contamination, CDC funding
•   “Community Room” includes discussion forums, “community action” advice/guidelines, “Cluster Investigation Request Process”
•   “Browse by Topic” links to websites for 40 topics
•   Also includes TFIA’s annual report, information on initiatives, staffing, career opportunities, news
•   Outstanding; one of the best places for action/awareness of a state’s environmental hazards as they affect public health


Womenshealthgov

•   Sponsored by the National Women’s Health Information Center, U.S. Department of Health and Human Services (HHS), Office of Women’s Health (OWH)
•   “OWH coordinates the efforts of all the HHS agencies and offices involved with women’s health”
•   “Health Topics” provides information on initiatives/news for 16 topical areas for women’s health, including pregnancy, body image, breast cancer, menopause/hormone therapy
•   “Health Organizations” offers a browsable directory of organizations for several hundred specific illness/health issue concerns
•   Also includes information on “Health Tools”( calculators, symptoms/tests), campaigns/events, initiatives, programs, publications
•   “We offer FREE women’s health information on more than 800 topics through our call center and web site”
•   Some resources on this page are available in Spanish
•   Outstanding; the best official federal resource for “one-stop-shopping” for women’s health information


Websites discussed on this page are for informational purposes only. Johnson & Wales University Library is not responsible for the accuracy, content, or stability of any website linked to this page. When in need of legal, medical, or nutritional advice, consult a professional.

Compiled by Rick Keogh, 2/06; links last checked 12/07

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