Vital Decisions: A Pew Internet Health Report
Appendix: Medical Library Association guide
Finding and evaluating health information on the Web
Editor’s note: Since this report raises so many questions about how consumers search for health information online, we asked the Medical Library Association to provide not only a guide to finding information but also examples of the best health Web sites their librarians have found. Included in this guide are general starting points as well as specific sites for cancer, diabetes, and heart disease.
Medical Library Association: A User’s Guide to Finding and Evaluating Health Information on the Web
Millions of Americans search for health information on the Web every year. Whether the health information is needed for personal reasons or for a loved one, millions of health-related Web pages are viewed by millions of consumers. Sometimes the information found is just what was needed. Other searches end in frustration or retrieval of inaccurate, even dangerous, information.
This guide outlines the collective wisdom of medical librarians who surf the Web every day to discover quality information in support of clinical and scientific decision making by doctors, scientists, and other health practitioners responsible for the nation’s health. This guide is supported by the Medical Library Association (MLA), the library organization whose primary purpose is promoting quality information for improved health and whose members were the first to realize that not all health information on the Web is credible, timely, or safe.
The guide is presented in three brief sections. The first section, “Getting Started,” provides tips on filtering the millions of health-related Web pages through the health subsets of major search engines and using quality electronic finding tools developed by the U.S. government to do an initial screen of Web sites for further examination. This section is followed by a set of guidelines developed for evaluating the content of health-related Web sites. The final section provides additional information of interest to consumers searching for health-related information on the Web.
As many people have discovered, clicking on a favorite search engine and entering a disease or medical condition can often result in hundreds, even thousands, of “hits.” This can be discouraging. Here are a few ideas for filtering the available Web pages to a manageable number:
If you are using a search engine such as Google or Yahoo, take advantage of the health subsets of these services for your search. Learn how to use the advanced searching features of the sites so that you can combine terms to make your retrieval more precise. For example, entering the term “cancer” and “chemotherapy” linked together is more powerful and precise than trying to read through all the hits found by simply entering the general term “cancer.”
Become familiar with the general health information finding tools such as MEDLINEPlus (http://www.medlineplus.gov), produced by the National Library of Medicine, or Healthfinder (http://www.healthfinder.gov), from the U.S. Department of Health and Human Services, which can get you started by pointing you to good, credible health information quickly. The Medical Library Association’s “Top Ten” list (http://www.mlanet.org/resources/medspeak/topten.html) is another device to help you start your search with a highly selective list of quality health information sites trusted by medical librarians.
When you have found sites that look relevant, use the guidelines below to help you decide whether the information is as credible, timely, and useful as it looks.
Content Evaluation Guidelines
- Can you easily identify the site sponsor? Sponsorship is important because it helps establish the site as respected and dependable. Does the site list advisory board members or consultants? This may give you further insights on the credibility of information published on the site.
- The Web address itself can provide additional information about the nature of the site and the sponsor’s intent.
A government agency has .gov in the address.
An educational institution is indicated by .edu in the address.
A professional organization such as a scientific or research society will be identified as .org. For example, the American Cancer Society’s Web site is http://www.cancer.org/
Commercial sites identified by .com will most often identify the sponsor as a company, for example Merck & Co., the pharmaceutical firm.
- What should you know about .com health sites? Commercial sites may represent a specific company or be sponsored by a company using the Web for commercial reasons – to sell products. At the same time, many commercial Web sites have valuable and credible information. Many hospitals have .com in their address. The site should fully disclose the sponsor of the site, including the identities of commercial and noncommercial organizations that have contributed funding, services, or material to the site.
- The site should be updated frequently. Health information changes constantly as new information is learned about diseases and treatments through research and patient care. Web sites should reflect the most up-to-date information.
- The Web site should be consistently available, with the date of the latest revision clearly posted. This usually appears at the bottom of the page.
- Factual information
- Information should be presented in a clear manner. It should be factual (not opinion) and capable of being verified from a primary information source such as the professional literature, abstracts, or links to other Web pages.
- Information represented as an opinion should be clearly stated and the source should be identified as a qualified professional or organization.
- The Web site should clearly state whether the information is intended for the consumer or the health professional.
- Many health information Web sites have two different areas – one for consumers, one for professionals. The design of the site should make selection of one area over the other clear to the user.
The Health on the Internet Foundation Code of Conduct (HONcode) for medical and health Web sites (http://www.hon.ch/HONcode/) specifies eight principles intended to hold Web site developers to basic ethical standards and to make sure consumers always know the source and purpose of the data they are reading. Participation is voluntary throughout the world, but sites displaying the foundation’s symbol are generally considered credible sources of information. Unfortunately, the number of sites participating is small.
Much of the health-related information that you find may seem to be written in a foreign language because of the highly technical terminology used in the health professions. To help you use and understand medical terminology on the Web, the Medical Library Association has published a brochure called “Deciphering Medspeak” which is available without charge in individual copies from the Medical Library Association by sending an email to email@example.com or by visiting the MLA Web site at www.mlanet.org. For bulk orders, please call 312-419-9094, Ext. 14, or email firstname.lastname@example.org.
Health sciences librarians at hospitals and academic medical centers throughout America stand ready to help consumers with do-it-yourself search assistance or will assist by performing professional searches of the Web for consumer and professional medical literature. If you don’t know whether your community has a health sciences library, please call the Medical Library Association at 312-419-9094.
Top ten most useful consumer health Web sites
Centers for Disease Control and Prevention (http://www.cdc.gov), an agency of the Department of Health and Human Services, is dedicated to promoting “health and quality of life by preventing and controlling disease, injury, and disability.” Of special interest to the consumer are the resources about diseases, conditions, and other special topics arranged under “Health Topics A-Z,” and “Travelers’ Health,” with health recommendations for travelers worldwide. There are also sections on health topics in the news and health hoaxes. Information is also available in Spanish.
Healthfinder (http://www.healthfinder.gov) is a gateway consumer health information Web site whose goal is “to improve consumer access to selected health information from government agencies, their many partner organizations, and other reliable sources that serve the public interest.” Menu lists on its home page provide links to online journals, medical dictionaries, minority health, and prevention and self-care. The developer and sponsor of this site is the Office of Disease Prevention and Health Promotion, Department of Health and Human Services, with other agencies that also can be linked to via the site. Access to resources on the site is also available in Spanish.
HealthWeb (http://healthweb.org) is a site established by librarians and information professionals from major academic medical institutions in the Midwest. Consumers can search the site either by entering search terms or by selecting one of the many alphabetically listed medical subjects. When a medical subject is selected, users can go into more depth by using the left side of the screen to select narrower subjects or categories. The site also provides “User Guides” developed to help consumers use Internet resources more effectively.
HIV InSite (http://hivinsite.ucsf.edu) is a project of the University of California San Francisco (UCSF) AIDS Research Institute. Designed as a gateway to in-depth information about particular aspects of HIV/AIDS, it provides numerous links to many authoritative sources. Subjects are arranged into “Key Topics” and the site may also be searched by key words. Many items are provided in full text, and information is available in English and Spanish.
MayoClinic (http://www.mayoclinic.com) is an extension of the Mayo Clinic’s commitment to provide health education to patients and the general public. Editors of the site include more than 2,000 physicians, scientists, writers, and educators at the Mayo Clinic, a nonprofit institution with more than 100 years of history in patient care, medical research, and education. A new format, which recently debuted, has added interactive tools to assist consumers in managing their health. This site supersedes the previous site, Mayo Clinic Health Oasis.
Medem (http://medem.com), a new site launched in the fall of 2000, is a project of the leading medical societies in the United States. Some of the founding societies include the American Medical Association, the American Academy of Pediatrics, and the American College of Obstetricians and Gynecologists. The site was developed to provide “a trusted online source for credible, comprehensive, and clinical healthcare information, and secure, confidential communications.” The “Medical Library” is divided into four major categories: Life Stages, Diseases and Conditions, Therapies and Health Strategies, and Health and Society.
MEDLINEplus (http://medlineplus.gov) is a consumer-oriented Web site established by the National Library of Medicine, the world’s largest biomedical library and creator of the MEDLINE database. An alphabetical list of “Health Topics” consists of more than 300 specific diseases, conditions, and wellness issues. Each Health Topic page contains links to authoritative information on that subject, as well as an optional link to a preformulated MEDLINE search that provides journal article citations on the subject. Additional resources include physician and hospital directories, several online medical dictionaries, and consumer drug information available by generic or brand name.
National Women’s Health Information Center (http://www.4women.gov) is a gateway to selected women’s health information resources. Its purpose is to provide a single site on the Web where women can located reliable, timely resources about “prevention, diagnosis, and treatment of the illnesses and health conditions that affect them.” It is sponsored by the U.S. Public Health Service’s Office on Women’s Health and provides access to a variety of women’s federal and private-sector resources. An alphabetical “Health Topics” menu simplifies searching. Information is available in both English and Spanish.
NOAH: New York Online Access to Health (http://www.noah-health.org) is a unique collection of state, local, and federal health resources for consumers. NOAH’s mission is “to provide high-quality, full-text information for consumers that is accurate, timely, relevant, and unbiased.” Information is arranged in alphabetical “Health Topics” which are then narrowed to include definitions, care and treatment, and lists of information resources. Information is available in both English and Spanish, and the majority of items are provided in full text.
OncolinkR: A University of Pennsylvania Cancer Center Resource (http://oncolink.upenn.edu), provides information on the various forms of cancer and issues of interest to cancer patients and their families. The site may be searched by key words or by menus, including disease-oriented menus and medical specialty-oriented menus. Major areas covered are cancer causes, symptom management, clinical trials, psychosocial support, cancer FAQs (frequently asked questions), and global resources for cancer information.
Recommended cancer Web sites
American Cancer Society (http://www.cancer.org) supports education and research in cancer prevention, diagnosis, detection, and treatment. Its Web page provides news, information on types of cancer, patient services, treatment options, sections on children with cancer and living with cancer, and cancer statistics. Site is also available in Spanish.
Association of Cancer Online Resources (http://www.acor.org) has a mission to provide “varied and credible” information to cancer patients and those who care for them through the “creation and maintenance of cancer-related Internet mailing lists and Web based resources.” ACOR currently offers access to nearly 150 public email cancer support groups, as well as ACOR-supported Web sites.
Cancer Care, Inc. (http://www.cancercare.org) is a nonprofit organization “whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral, and direct financial assistance.” Maintains links to support, educational, treatment, and information services. Site is also available in Spanish.
CancerNet – National Cancer Institute (http://cancernet.nci.nih.gov). Produced by the National Cancer Institute of the National Institutes of Health, it provides information on types of cancer; treatment options; clinical trials; genetics, causes, risk factors and prevention; testing; coping, and support resources. It also provides free access to the PDQ® and Cancerlit databases. Site is also available in Spanish.
Families of Children with Cancer (http://www.fcco.org/resources.html), located in Toronto, Canada, is a support and advocacy group for families living with the effects of childhood cancer. Its Web page has a wide variety of links to Internet information sources on pediatric cancer including basic information, treatment and research centers, community organizations, personal Web pages, and a chat support line.
Intercultural Cancer Council (http://icc.bcm.tmc.edu). Produced at the Texas Medical Center in Houston, this Web page has as its goal the elimination of “the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the United States.” It provides news, press releases, links to cancer information sites, and a calendar of upcoming events.
Oncolink (http://oncolink.upenn.edu) is a collection of Internet resources on the prevention and treatment of cancer maintained by the University of Pennsylvania Cancer Center. Includes news, book reviews, disease, and patient support links.
Women’s Cancer Network (http://www.wcn.org) is the official site of the Gynecologic Cancer Foundation – physicians “dedicated to preventing, detecting and conquering cancer in women.” It has information on the organization, the types of cancer that affect women, cancer risks for women, and a search engine to locate gynecologic oncologists. There are also links to related sites, publications, and support groups.
Recommended diabetes Web sites
American Diabetes Association (http://www.diabetes.org) is the leading nonprofit health organization dedicated to diabetes. The mission of the organization is “to prevent and cure diabetes and to improve the lives of all people affected by diabetes.” To accomplish this, the American Diabetes Association funds research, publishes scientific findings, and provides information and other services to people with diabetes, their families, health care professionals, and the public. The site contains basic information about diabetes, such as healthy living choices, insulin reactions, exercise, and diet. Other features include diabetes in the news, online shopping, ADA-sponsored events, and a section for health care professionals.
Ask NOAH about Diabetes (http://www.noah-health.org/english/illness/diabetes/diabetes.html) is a subsection of a unique and widely used site sponsored by a consortium of libraries in New York known as NOAH (New York Online Access to Health). An extensive collection of full-text consumer health information is easily accessible by clicking on the appropriate topic on the main diabetes page. From there, the user can continue to click on subcategories under each main heading. Information is available in English and Spanish, and there are categories for gender-specific, age-specific, and race-specific issues.
Centers for Disease Control and Prevention (CDC) (http://www.cdc.gov/diabetes/), an agency of the Department of Health and Human Services, is dedicated to promoting the “health and quality of life by preventing and controlling disease, injury, and disability”. The Diabetes Public Health Resource page contains links to information on professional conferences, frequently asked questions (FAQs) about diabetes, projects such as the National Diabetes Education program, links to related sites on diabetes, news and information, publications and products, descriptions of state-based programs, and statistics about the disease. The target audience for this site is adults, both consumers and professionals. Spanish language information is also included. Users of the site can easily connect to the CDC home page to look up other subjects via “Health Topics A-Z.
Diabetes 123 (http://www.diabetes123.com/) is an organization whose mission is “to be the world leader in online diabetes care, improving the quality and reducing the cost of care by increasing the understanding of, and providing traditional and innovative products and services for, the treatment of all types of diabetes.” In addition to the main site at diabetes 123, the organization also sponsors the Children with Diabetes site and The Diabetes Monitor. The main site is presented as an online magazine, and the home page serves as a table of contents to a variety of options, such as news and research articles, educational feature articles, chat rooms and other people connections, an “ask the diabetes team” section, and an online store. Although this site does accept advertising, it subscribes to the HONcode principles of the Health On the Net Foundation, as do the two related sites sponsored by diabetes 123.
Children with Diabetes (http://www.childrenwithdiabetes.com) is sponsored by the Diabetes 123 organization and considers itself to be “the online community for kids, families and adults with diabetes.” Like the parent site at diabetes 123, the home page is like a table of contents for the remainder of the site pages, offering options similar to diabetes 123, but focused primarily on the needs of children with diabetes.
The Diabetes Monitor (http://www.diabetesmonitor.com/) is a site that is “monitoring diabetes happenings everywhere in cyberspace.” Sponsored by Diabetes 123, it provides a registry of diabetes-related Web sites around the world. Each entry in the list includes the name and URL for a specific Web site, along with a sentence or two describing the contents of that site. In addition to the “Diabetes Registry,” the home page has links to news about diabetes, as well as links to the other two sites sponsored by Diabetes 123. A separate site called Diabetes Monitor: Four Star Sites (http://www.diabetesmonitor.com/fourstar.htm) provides a more selective list of diabetes Web sites that have been judged to be the best by a panel of Webmasters of such sites.
Joslin Diabetes Center (http://www.joslin.harvard.edu/) is a site provided by one of the leading diabetes clinics in the United States. Affiliated with Harvard Medical School, the Joslin Web site is aimed at patients and professionals. The “Managing Diabetes” section has a library of information for patients, discussion boards, descriptions of patient programs and camps for children with diabetes, and a store to purchase books and videos on various aspects of the disease. Other sections of the site provide information about the Joslin Diabetes Center, professional education, and research. The “Diabetes News” area has current updates about legislative activities, press releases, and the latest news in diabetes care and research.
Juvenile Diabetes Research Foundation International (http://www.jdf.org/) is dedicated to fostering research to find a cure for diabetes. The site includes information about JDRF-sponsored research, its chapters and affiliates, ways to support JDRF, its publications, and it legislative activities. A kids online section provides links to a variety of materials directed at children and teens, with an index divided into specific age groups. A quarterly online magazine called Countdown For Kids is one of these links. Launched in 1996, its goal is to provide news, help, inspirational tools, educational tools, and fun for kids ages 8 and up.
National Institute of Diabetes & Digestive & Kidney Diseases (http://www.niddk.nih.gov) is a government-supported site highlighting the work of the NIDDK, one of the National Institutes of Health. NIDDK is dedicated to conducting and funding research on diabetes and digestive and kidney diseases, and the Web site devotes approximately one third of its content to diabetes and its related diseases. Consumer health information is organized into an A-Z list. “Easy-to-read” versions and Spanish-language versions are included for many of topics. In addition to consumer health information, the site also provides information about research and funding opportunities, clinical trials, health education programs, NIDDK laboratories, and reports about planning and congressional activities.
Recommended heart disease Web sites
American Heart Association (AHA) (http://www.americanheart.org). This is the official Web site of the American Heart Association, with links to the American Stroke Association (http://strokeassociation.org), a division of the AHA. The “Heart and Stroke A-Z Guide” provides a broad spectrum of information, including warnings signs for heart disease and stroke, an easy-to-use reference guide, a legislative action package, family health information (nutrition, exercise, children, programs or books), risk awareness for patients, scientific and professional information, solicitation options for volunteers, local AHA chapters, and donations. There is information on everything from scientific guidelines to training guides to ads for the Jump Rope for Heart program or The American Heart Walk. Of special note are the public advocacy pages with legislative priorities. Sponsorship is clear, content is factual, and policy briefs are clearly identified as such.
American Heart Association Women’s Web site (http://www.women.americanheart.org). Since heart disease and stroke affect one out of every two women, the AHA has developed a site focused on women’s heart-related information needs entitled “Take wellness to heart.” Special features include a “talk to us” component in which women share personal stories, “register now” feature to receive emails with links to new features and information, and the ability to enroll in personal management programs.
Congenital Heart Information Network (http://tchin.org). This site provides high-quality information for children and adults with congenital heart disease, their families, and health professionals. It is an international organization that aims to provide reliable information, support, and research to families of children with congenital and acquired heart disease, adults with congenital heart defects, and professionals who work with them. Proudly subscribing to the HON code, it has won so many awards it includes a special link to list them. Elements include portraits of patients, a teen lounge area, local chapter links, email options, and lists for family support.
Heart Information Network (http://heartinfo.org). The Center for Cardiovascular Education is affiliated with this site. It is an independent, educational site that provides a wide range of information and services to heart patients and others interested in learning about lowering risk factors for heart disease.
March of Dimes Birth Defects (http://modimes.org). The March of Dimes Foundation sponsors this site, which focuses on birth defects with emphasis on congenital heart disease. An array of information is provided from fact sheets, health statistics, research centers, support groups, programs, local chapters (searchable by ZIP code), and the organization’s national ambassador program.
Mayo Clinic Heart Center (http://www.mayoclinic.com or http://www.mayohealth.org/). Experts of the Mayo Clinic offer extensive information on coronary artery disease, preventing heart disease, high blood pressure, circulatory problems, and methods of treatment and prevention. Selecting Heart & Blood Vessels under Condition Centers or Diseases & Conditions A-Z provides links to qualitative information and further links. The site fosters taking charge of one’s health via scorecards, planners, etc.
National Center for Chronic Disease Prevention and Health Promotion (http://www.cdc.gov/nccdphp/). Part of the CDC, this agency’s purpose is to enable people in an increasingly diverse society to lead long, healthy, satisfying lives. Since heart disease and stroke are the first and third leading causes of death in the United States, cardiovascular disease (CVD) prevention and health promotion programs are major priorities. The Cardiovascular Health page provides international, national, and state-level programs, along with statistical information and fact sheets. In 1998, the CDC received funding for states to develop comprehensive cardiovascular health programs; this agency coordinates these efforts.
National Center for Health Statistics (NCHS) (http://www.cdc.gov/nchs/html). NCHS is the federal government’s principal agency for vital statistics and health statistics. A search for data on heart disease retrieved more than 2,100 primary statistical documents. It is the source for health statistics, surveys, and analysis. With legislative authority and mandates, it now also provides advice and information alerts for individuals. Internet users can now sign up for specific listservs to stay current with new statistical information on heart disease.
National Heart, Lung and Blood Institute (NHLBI) (http://www.nhlbi.nih.gov). Part of NIH, this agency provides leadership for a national program in diseases of the heart, blood vessels, lung and blood, blood resources, and sleep disorders. Since October 1997 it also has administrative responsibilities for the NIH Woman’s Health Initiative. The site provides an array of basic and specific heart and vascular disease information, covering topics such as high blood pressure, cholesterol, and obesity, and offers resources for Latino users. A lengthy list of the agency’s reports and scientific documents is available, and the agency maintains its own database of clinical trials and studies seeking patients.
NOAH: New York Online Access to Health (http://www.noah-health.org). Although this site covers a broad range of health topics, the heart disease and stroke pages are so extensive they must be included on this list. The table of contents for this section alone is 12 printed pages. In addition to basic information, care, and treatment, the site includes AHA state chapters and Heart links, a Mended Hearts support group, hospital ratings of cardiac units nationwide, and capabilities for the blind or the visually handicapped to use the site.