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You May Want More Information
After contacting the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) or the NIAMS Information Clearinghouse, you may want to find additional information on a disease or disorder. Searching for medical information can be confusing, especially for first-timers. However, if you are patient and stick to it, you can find a wealth of information. Today’s computer technology is making it easier than ever for people to track down medical and health information. There are also many other sources of medical information available in textbooks, journal articles, and reference books and from health care organizations. This booklet explains how to locate these important sources of information.
|Where to Find Medical Information|
Federal Government clearinghouses
Associations and voluntary organizations
Medical, hospital, or university libraries
Nurse, pharmacist, dietitian, or other health professional
Telephone or fax services
Start With Your Community Library
Most people have a library in or near their community, and it’s a good place to start to look for medical information. Before going to the library, you may find it helpful to make a list of topics you want information about and questions you have. Also, if you’ve received a NIAMS information package, you’ll notice the list of additional references at the end of most articles. You may want to get a copy of some of these articles. Your topic list and the information package will make it easier for the librarian to direct you to the best resources.
Basic Medical References
Many community libraries have a collection of basic medical references. These references may include medical dictionaries or encyclopedias, drug information handbooks, basic medical and nursing textbooks, and directories of physicians and medical specialists (listings of doctors). You may also wish to find magazine articles on a certain topic. Look in theReader’s Guide to Periodical Literature for articles on health and medicine that were published in consumer magazines.
Infotrac, a CD-ROM computer database you’re most likely to find at a public library, indexes hundreds of popular magazines and newspapers, as well as some medical journals such as the Journal of the American Medical Association and New England Journal of Medicine. Your library may also carry MEDLINE®, Index Medicus, Abridged Index Medicus, or theCumulative Index to Nursing and Allied Health Literature in print format or on a computer database. The Consumer Health and Nutrition Index may be available in print form as well. These resources will help you find journal articles written for health professionals. Many of the indexes have abstracts that provide a summary of each journal article. Articles published in medical journals can be technical, but they may be the most current source of information on medical topics.
Although most community libraries don’t have a large collection of medical and nursing journals, your librarian may be able to get copies of the articles you want. Interlibrary loans allow your librarian to request a copy of an article from a library that carries that particular medical journal. Your library may charge a fee for this service.
Medical and Health Directories
You may find many useful medical and health information directories at your library. Ask your librarian about the following resources:*
Directory of Physicians in the United States. Chicago, IL: American Medical Association (AMA) updated yearly-provides information such as address, medical school attended, year of license, specialty, and certifications for physicians who are members of the AMA.
Health Hotlines-a booklet of toll-free numbers of health information hotlines available from the National Library of Medicine (NLM) or on the Internet at http://newsis.nlm.nih.gov/hotlines/.
Medical and Health Information Directory. 9th edition. Detroit, MI: Gale Research, 1997-includes publications, organizations, libraries, and health services (three volumes).
The Official ABMS Directory of Board Certified Medical Specialists.New Providence, NJ: Marquis Who’s Who, updated yearly-provides information on physicians certified in various specialties by the American Board of Medical Specialists.
Rees, A., editor. The Consumer Health Information Sourcebook. 5th edition. Phoenix, AZ: Oryx Press, 1997-lists information clearinghouses, books, and other resources.
White, B.J., & Madone, E., editors. The Self-Help Sourcebook: The Comprehensive Reference of Self-Help Group Resources. 6th edition. Denville, NJ: Northwest Covenant Medical Center, 1997-lists over 700 organizations that offer support groups.
* Names of resources and organizations included in this fact sheet are provided as examples only, and their inclusion does not mean that they are endorsed by the National Institutes of Health or any other Government agency. Also, if a particular resource or organization is not mentioned, this does not mean or imply that it is unsatisfactory.
If you find a particularly useful book at the library, you can buy a copy at your local bookstore. If the book isn’t in stock, your bookstore can probably order a copy for you.
Some medical references have been converted from book form to a CD-ROM or disk for use on a personal computer. If you have a computer with a CD-ROM drive, color monitor, and sound card, you can use compact disks to locate medical information. Check with your local bookstore or computer store for software programs that contain health information.
Some Popular References for the Home Library
American Medical Association Complete Guide to Women’s Health. 1996; and American Medical Association Family Medical Guide. 3rd edition. 1994. New York, NY: Random House (available in book and CD-ROM format).
The Columbia University College of Physicians and Surgeons Complete Home Medical Guide. 3rd edition. New York, NY: Crown Publishers, 1995.
Everything You Need to Know About Medical Tests.Springhouse, PA: Springhouse Corporation, 1996.
Johns Hopkins Symptoms and Remedies: The Complete Home Medical Reference. New York, NY: Medletter Associates, Inc., 1995.
Mayo Clinic Family Health. 3rd edition. New York, NY: William Morrow, Inc., 1997 (available as a book, CD-ROM, or computer disk).
The Merck Manual of Medical Information (Home Edition). Rahway, NJ: The Merck Publishing Group, 1997.
Professional Guide to Disease. 6th edition. Springhouse, PA: Springhouse Corporation, 1998.
Take Advantage of Services Provided by the Federal Government and Other Organizations
The Federal Government operates a number of clearinghouses and information centers-the NIAMS Information Clearinghouse is one of them. Services vary but may include publications, referrals, and answers to consumer inquiries. To obtain a free list of Federal information clearinghouses, visit the National Health Information Center’s home page (http://www.health.gov/nhic), write to P.O. Box 1133, Washington, DC 20013-1133, or call (800) 336-4797.
Associations and Voluntary Organizations
Many associations and voluntary organizations are excellent sources of information. Some are devoted to specific diseases or conditions, such as the Scleroderma Foundation, National Alopecia Areata Foundation, National Psoriasis Foundation, and numerous others. Other organizations, such as the American Association of Retired Persons, serve a particular population group and provide a variety of information, including health-related topics. Your librarian or a NIAMS Information Clearinghouse information specialist can help you locate appropriate organizations and support networks. Many of these organizations offer referrals, publications, newsletters, educational programs, and local support groups. Your doctor may be able to tell you about support groups in your community as well.
Examples of Health-Related Associations and Organizations
American Academy of Dermatology
American Academy of Orthopaedic Surgeons
American College of Rheumatology
American Skin Association
Lupus Foundation of America
There are many more organizations; call the NIAMS Information Clearinghouse for additional information.
Look for a Medical Library
Medical libraries can usually be found at medical, nursing, and dental schools; large medical centers; and community hospitals. Not all hospital or academic libraries are open to the public, but a librarian at your community library may be able to give you information about the closest medical library open to the public. Medical libraries may also be listed in your telephone book under “hospitals,” “schools,” or “universities.” In addition, you can call the National Network of Libraries of Medicine of the NLM, National Institutes of Health, at (800) 338-7657 to find the location of the nearest regional medical library.
A medical library has a large collection of resources, including many medical and nursing textbooks and a comprehensive collection of medical and health-related journals. Although you may not be allowed to check out materials, most libraries have photocopiers you can use to copy material you want to take home.
Directories of board-certified medical specialists
Drug reference books
Medical and diagnostic laboratory testing manuals
Medical and health information directories
Medical, nursing, and allied health textbooks
Investigate Other Options for Finding Information
People who are unable to get to a community or medical library have several options for finding additional medical information. Some community libraries provide access to on-line databases that can be searched from a home computer via a modem. In addition, your doctor, nurse, pharmacist, dietitian, or the patient education department at your local hospital may be able to provide you with pamphlets, brochures, and journal articles or direct you to classes, seminars, and health screenings.
Use Telephone and Fax Services
Some communities have a telephone medical service that allows callers to listen to audiotapes on certain disease topics. Also, your health insurance company or health maintenance organization may have a nurse available to answer health-related questions over the telephone. If you have access to a fax machine, you can get health information from some organizations in just a few minutes. If a faxback system is available, use the telephone on your fax machine to call the faxback number of the organization and listen to the instructions. In most cases, you can request a list or menu of information to be sent to you first.
Other organizations also have information available by fax; one example is the Centers for Disease Control and Prevention at (888) 232-3299 (toll free). Your librarian can help you locate other fax services.
Explore Computer Databases
The computer has become an important tool for helping people locate medical and health information quickly and easily. Most software and information services are user friendly and allow people with no formal training in computer searching to use databases to obtain information. Using a computer at home or in the library, you can find health information by searching CD-ROM databases, searching on-line on the Internet, or using a health-related software program.
As mentioned earlier, many public libraries have Infotrac, a database that includes consumer health information. It indexes popular magazines and newspapers and 2 to 4 years’ worth of medical publications. Medical libraries have more extensive medical databases. Start with the following list and ask your librarian to help you find the most appropriate CD-ROM or on-line (Internet) databases for your needs:
MEDLINE®. The largest and best known of the MEDLARS databases, MEDLINE® contains citations and often abstracts for over 9 million articles in 3,900 biomedical journals on all aspects of biomedicine and allied health fields from 1966 to the present. MEDLINE® is available at medical and university libraries, at some community libraries, and through a variety of fee-based and free Internet sites, including the NLM Web site at http://www.nlm.nih.gov/.
DIRLINE®. This database, a part of MEDLARS, contains location and description information about a wide variety of resources, including organizations, research resources, projects, databases, and electronic bulletin boards concerned with health and biomedicine. The database is available on-line through the NLM at no fee.
CHID (Combined Health Information Database). Developed and managed by health-related agencies of the Federal Government, this database can help people find information and educational resources such as brochures, books, and audiovisuals on selected topics. CHID contains 17 subfiles, including the Arthritis and Musculoskeletal and Skin Diseases subfile. It is available on the Internet at no fee athttp://chid.nih.gov/.
Some Health Resources to Check Out on the WWW
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health
National Library of Medicine
American Academy of Dermatology
Search the Internet
The Internet is a worldwide network of computers that can exchange information almost instantaneously. The World Wide Web (abbreviated www in computer addresses), or more simply, the Web, is a system of electronic documents linked together and available on the Internet for anyone with a computer, a modem, and an Internet provider account. While the terms “Internet” and “World Wide Web” are often used interchangeably, the Web is actually the part of the Internet that supports the use of graphics, pictures, sound, and even video.
If you have access to the Web, you can find information on everything from the latest medical research to facts on particular conditions. You may have access at home or at work to Internet databases through a commercial service such as America Online or through a local Internet provider. Many public libraries have computer stations that provide Internet access.
You’ll find extensive health and medical information on the Internet. America Online and other Internet providers and sites offer MEDLINE®; some sites may charge a search fee. The Internet also offers other resources such as bulletin boards, online publications, forums for discussion of current medical issues, and on-line support groups. For example, the American Self-Help Clearinghouse offers an on-line version of its Self-Help Sourcebook at http://www.amhc.org/selfhelp/.
that provides information on support groups and networks available in your community and throughout the world. The site also provides a link to the Self-Help Resource Room that contains information about on-line support groups and other health resources.
Help With Searching on the Internet
Searching for health information on the Internet can be confusing and difficult. The sheer volume of information can be overwhelming, and people often find it difficult to narrow down search topics or find specific Web sites. Although an Internet search engine such as Google or Bing is meant to help you find information, search results on specific topics often reveal thousands of Web sites, many of which may be unrelated to the information you want. You may want to get a copy of a reference book that provides tips on how to find health information on the Internet. Health On-line, by Tom Ferguson, M.D. (Addison-Wesley Publishing Company, 1996), is an example of one reference that can help you use the Internet to find health information and support groups.
National Library of Medicine
You can search the NLM’s MEDLINE® database, free of charge, on the Web. The link to this database can be found on the NLM home page athttp://www.nlm.nih.gov/. You can conduct a search in one of two Web-based products, PubMed or Internet Grateful Med. Both provide you with free access to MEDLINE® and, for a fee, allow you to use Loansome Doc Delivery Service to order copies of articles. PubMed links you to publishers’ sites for approximately 100 full-text journals; some are by subscription only. Internet Grateful Med also gives you access to other databases, including AIDSLINE, HealthSTAR, AIDSDRUGS, and AIDSTRIALS.
To help people find health information on the Internet, the Federal Government’s Department of Health and Human Services has developed a Web site-healthfinder® (http://www.healthfinder.gov/). This site serves as a gateway or point of entry to the broad range of consumer health information resources produced by the Federal Government and many of its partners. healthfinder® includes a searchable index and locator aids for news, publications, on-line journals, support and self-help groups, on-line discussions, and toll-free numbers.
As you make purchases for your home library or search the Internet, keep in mind that not all information is written by qualified medical experts. Your doctor or a health organization may be able to recommend some good books or helpful Internet sites. When looking for health information on the Internet, don’t believe everything you see. Articles published in peer-reviewed medical journals are checked for accuracy, but anyone can put information on the Internet, so there’s no guarantee that the information you find is accurate or up-to-date. In addition, many companies set up Web sites primarily to sell their products. It may be helpful to ask a health professional about the information you find on the Internet, particularly before you buy any products. If you search and shop with care, you can add some medically sound reference materials to your home library and find accurate information on the Internet.
Use Information Wisely
It can be hard to judge the accuracy and credibility of medical information you read in books or magazines, see on television, or find on the Internet. Even people with medical backgrounds sometimes find this task challenging. Following are some important tips to help you decide what information is believable and accurate.
Books, Articles, and Television Reports
- Compare several different resources on the same topic. Check two or three other articles or books to see whether the information or advice is similar.
- Check the author’s credentials by looking up his or her affiliations, such as university and medical school attended, associations, and lists of other publications. For doctors, this information can be found in one of the physician directories at your library or on the AMA’s Web site at http://ama-assn.org/ (click on AMA Physician Select). You can also call the American Board of Medical Specialists at (800) 776-2378 to see whether a physician is board certified in his or her specialty. Your librarian can help you find other resources to check the credentials of nonphysicians.
- Ask yourself if the information or advice “rings true.” That is, is it feasible, plausible, and common sense, or is it wishful thinking or sensationalism?
- Look for a list of references at the end of the article or book. Information that is backed up by other medical professionals and researchers is more likely to be accurate.
- Check out your information source. Was the article published in a peer-reviewed journal? Look for a list of editorial or review board members at the beginning of a journal. In a peer-reviewed journal, articles are reviewed by other qualified members of the profession for accuracy and reliability.
- Look very carefully at information published in newspapers and magazines or reported on television. Most reporters are journalists rather than medical experts. In addition, newspapers and television reporters may use sensationalism to attract more readers or viewers. Medical facts and statistics can be misrepresented or incomplete. Check to see whether the newspaper or magazine cites a source for its information and includes the credentials of the persons cited.
- Examine a magazine’s list of editors. Do medical experts serve as editors and review articles? Be especially wary of personal testimonials of miracle cures. There’s often no way of judging whether the story is true. Furthermore, don’t trust medical product advertisements claiming miracle cures or spectacular results.
- Compare the information you find on the Internet with other resources. Check two or three articles in the medical literature or medical textbooks to see whether the information or advice is similar.
- Check the author’s or organization’s credentials. They should be clearly displayed on the Web site. If the credentials are missing, consider this a red flag. Unfortunately, there are many phony doctors and other health professionals making false claims on the Internet.
- Find out if the Web site is maintained by a reputable health organization. Remember that no one regulates information on the Internet. Anyone can set up a home page and claim anything. Some reliable Web sites providing health information include those of government agencies, health foundations and associations, and medical colleges.
- Be wary of Web sites advertising and selling products that claim to improve your health. More important, be very careful about giving out credit-card information on the Internet. Further, even if nothing is being sold on a Web site, ask yourself if the site host has an interest in promoting a particular product or service.
- Ask yourself whether the information or advice seems to contradict what you’ve learned from your doctor. If so, talk to your doctor to clarify the differences in the information.
- Be cautious when using information found on bulletin boards or during “chat” sessions with others. Testimonials and personal stories are based on one person’s experience rather than on objective facts or proven medical research.
To Make Informed Decisions About Your Health Care, You Need to Understand Your Health Problem
Medical information, especially material written for health care providers, can be hard to understand, confusing, and sometimes frightening. As you read through your materials, write down any words or information you don’t understand or find confusing. Make a list of your questions and concerns. During your next office visit, ask your doctor, nurse, or other health professional to review the information with you so that you understand clearly how it might be helpful to you.
If the medical information you gathered is for a personal health problem, you may want to share what you found with your spouse, other family members, or a close friend. Family members and friends who understand your health problem are better able to provide needed support and care. Finally, you might want to consider joining a support group in your community. You may find it helpful to be able to talk with others who have the same health problem and share your feelings or concerns.
Ultimately, the information you gather from print and electronic resources can help you make decisions about your health care-how to prevent illness, maintain optimal health, and address your specific health problems. Armed with this knowledge, you can more actively work in partnership with your doctor and other health care professionals to explore treatment options and make health care decisions. Health care experts predict that today’s computer and telecommunication systems will result in a new era-the health care system information age-built around health-savvy, health-responsible consumers who are the primary managers of their own health and medical care.
For More Information
National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
NIAMS/National Institutes of Health
1 AMS Circle
Bethesda, MD 20892–3675
Phone: (301) 495–4484 or (877) 22-NIAMS (toll free)
TTY: (301) 565–2966
Fax: (301) 718–6366
The NIAMS gratefully acknowledges the assistance of Ron Gordner, M.L.S., and Gail Dutcher, M.L.S., of the National Library of Medicine; Mary Jo Deering, Ph.D., of the Office of Disease Prevention and Health Promotion, Office of the Secretary, Department of Health and Human Services; and Amye Leong, an arthritis patient advocate based in San Pedro Peninsula, CA, and a member of the NAMS Advisory Council, in the review of this booklet.
About NIAMS and Its Clearinghouse: The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the National Institutes of Health (NIH), leads the Federal medical research effort in arthritis and musculoskeletal and skin diseases. The NIAMS supports research and research training throughout the United States, as well as on the NIH campus in Bethesda, MD, and disseminates health and research information. The National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse (NAMSIC) is a public service sponsored by the NIAMS that provides health information and information sources.
Additional information can be found on the NIAMS Web site at http://www.niams.nih.gov/