Consumer health information on the Web: trends, issues, and strategies
As a primary point of contact for patients and their families, medical-surgical nurses are leading the current trends in patient participation and customer choice in medical care. An important component of this movement is access to information and decision-making tools that empower patients to become informed about their medical choices. Nurses play crucial roles in shared decision-making processes through facilitating, informing, and guiding patients and their families, and by sharing ownership of the decision that results. The health information and decision tools available via the World Wide Web are among the most important components of this evolution in health care. Increasingly, nurses must facilitate and guide patients and their families in the effective use of Web-based health information. However, a number of technological and social barriers must be addressed for success to be achieved. It is important for medical-surgical nurses to understand trends in health information access, issues related to the quality of information on the Web, and health care decision support strategies. Two barriers to Web use, health literacy and digital divide, will be discussed. Finally, valuable online resources for nurses to share with their patients and families will be presented and applied using a case study. Older adult health will be used to illustrate these issues; however, the same processes and strategies can be used regardless of age or health condition.
Consumer Health Informatics
Information technology for health care consumers is growing in complexity and parallels developments for nurses and other care providers. A branch of medical informatics, called consumer health informatics (CHI), is evolving to focus specifically on how consumers access and use health information for decision making (Hersey, Matheson, & Lohr, 1997). CHI analyzes consumer needs for information, studies and implements methods of making information accessible to consumers, and models and integrates consumers’ preferences into medical information systems (Eysenbach, 2000). CHI stands at the crossroads of other disciplines, such as nursing informatics, public health, health promotion, and health education, and is paving the way for health care in the information age. The issues and strategies that are discussed below are some of the primary focuses of CHI.
Trends in Health Information Access
Two trends are obvious from even a cursory study of current society: (a) there is an increasing reliance on information technologies, and (b) the population is growing older. Within a decade of its introduction to the general public, the Internet has become an integral part of our society. Internet use is rapidly growing across all demographic groups and geographic regions. More than half of the nation is now online, and there are about 2 million new Internet users each month in the United States. Internet use is increasing for people regardless of income, education, age, race, ethnicity, or group. The highest rates of growth are from disadvantaged groups such as minorities, single-parent households, rural users, and persons with lower incomes (National Telecommunications and Information Administration [NTIA], 2002).
Older adults are active participants in this age of information technology. The growth rate of Internet use among elders is the fastest compared to all ages (NTIA, 2000). Older adults are still less likely than younger Americans to use the Internet, but the gap is narrowing. As the baby boomers age, they will likely continue their frequent computer and Internet use. A trend analysis of a series of 10 Internet usage surveys conducted since 1994 also indicates that the general demographics of the Internet user population is moving closer to the characteristics of the general population, particularly in regard to the age of users (Kehoe, Pitkow, Sutton, Aggarwal, & Rogers, 1999; Pitkow, 1997).
Within the last decade, online health information resources have moved beyond the confines of professional and education realms to the general public. Surveys of Internet use show that health information is one of the most cited reasons for searching the Internet (Health On the Net Foundation, 2001). When MEDLINE, the national medical information service, was made available free of charge and open to the public in 1997, the number of searches increased from 7 million per year to 180 million (Lindberg, 2002a). The number of MEDLINE searches conducted by the general public (30%) was nearly equal to the number of searches conducted by health care professionals (34%) and researchers (36%) (Lindberg, 1998). To better serve the general public, the National Library of Medicine created MEDLINEPlus to help people find appropriate, authoritative health information. More recently, specialized sections of MEDLINEPlus, such as Seniors’ Health, have been developed to organize information better for targeted populations (Lindberg, 2002a). MEDLINEPlus is now accessed over 100 million times per year, and in 1 month there are 1 million unique users (Lindberg, 2002b).
Quality of Health Information on the Web
Older adults face questions and seek information about health care products and services daily. Thousands of Web sites are devoted to health information. The explosion of health information on the Web has resulted in a shift in Web searching from one of simply finding information on a topic to evaluating the quality of a wide range of information. Unfortunately, consumers often find it difficult to differentiate between truth and deception when it comes to reviewing health care information. Nurses can help their patients and families become better informed Internet users.
The quality of the information on the Web, or any media source, ranges from accurate and up-to-date to erroneous and fraudulent (Fallis & Fricke, 2002). No governing body or authority is responsible for evaluating the quality of information on the Web. The concern about the quality of medical advice provided on Web sites led to the development of voluntary codes of conduct and evaluation guidelines. The intent of the codes and guidelines is to raise the quality of health information available over the Internet using self-regulatory and voluntary means. For example, the Health On the Net Foundation (HON) Code of Conduct addresses issues such as the authority of the information, confidentiality and privacy, attribution of sources, transparency of ownership, and the separation between advertising and editorial content (HON Foundation, 2000). The process involves a review of the site before the HON Code symbol can be displayed. However, the HON does not rate the medical accuracy, validity, or appropriateness of the information itself. HON encourages users to practice caution and healthy skepticism, and to develop the knowledge and discernment necessary to avoid dubious Web sites. While research indicates that the HON Code seal on Web sites can be a useful reference, quality criteria and evaluation guidelines should be used by any individual who is reviewing health information (Fallis & Fricke, 2002).
An example of a Web site evaluation guide is Evaluating Health Information on the World Wide Web. A Guide for Older Adults and Caregivers published by the SPRY Foundation (2002). This guide is designed to help consumers use widely accepted procedures for evaluating the accuracy, completeness, clarity, and usefulness of a health information Web site. The guide also provides a simple checklist and tips on finding reliable health Web sites.
Health fraud, relying on fraudulent claims of cures and false hopes to obtain money, has been around for centuries. It promises quick cures for dozens of medical conditions from Alzheimer’s disease and osteoporosis to aging itself. The ability of the Internet to distribute information rapidly, cheaply, and virtually anonymously has resulted in serious health care fraud being perpetrated online. With millions of Americans using the Web to obtain health information and purchase drugs, medical devices, and related products, the potential for abuse and health problems is enormous. In addition to losing money, the victim of false medical claims or faulty products and services can suffer dangerous drug interactions, stop effective treatments, and experience other serious health consequences. In 1999, the Federal Trade Commission (FTC), the U.S. Food and Drug Administration (FDA), and state attorney general offices joined forces in Operation Cure.All, which targets unsubstantiated health claims, unsafe products, and harmful medical practices on the Internet (FTC, n.d.). Because a Web site can be located virtually anywhere in the world, Cure.All has also joined forces with an international network of consumer protection law enforcement agencies to combat health fraud on the World Wide Web (see Figure 1).
[FIGURE 1 OMITTED]
Cure.All is both an enforcement and consumer education program. Since the launch of Operation Cure.All, numerous prosecutions have occurred, and over 100 Web sites have been closed or removed their bogus health claims (FTC, 2001). Over 1,600 sites worldwide have been identified as making questionable claims for products marketed as treatments for heart disease, cancer, HIV/AIDS, and other serious illnesses (FTC, 2001). Many more bogus sites exist and will be created in the future as long as money can be made on the activity. Consumers are encouraged to report suspicious health claims to either the FTC (www.ftc.gov) or the FDA (www.fda.gov).
Perhaps the most important component of Operation Cure.All is consumer education. Perpetrators of health care fraud often use similar claims and practices to lure people into spending money. These practices include amazing testimonials and claims of “miraculous cures,” claims to cure a wide range of unrelated diseases, and failure to list contact information on the Web site. Several free, consumer-level publications such as Miracle Health Claims: Add a Dose of Skepticism and Health Claims on the Internet: Buyer Beware, are available to help consumers recognize and avoid health fraud (FTC, n.d.). Cure.All also targets educational programs for businesses on truthfully marketing health products and services. These publications can be freely downloaded and printed, or paper copies for consumers can be obtained directly from Operation Cure.All.
Decision Support Strategies
Armed with knowledge gleaned from the Internet and other sources, patients are demanding that they have an active role in guiding the development and implementation of their health care. For many health decisions, such as which treatment to follow, which doctor to see, or which health plan to use, no absolute right choices exist. Several options may be available for these important decisions, each with positive and negative features. Access to information that clearly and succinctly compares the benefits and risks of those options would be very valuable to patients. The Web provides access to a vast amount of health information; however, rarely are comparative analyses available. Frequently, nurses need to assist their patients in understanding and using the information for decision making. Decision support strategies can help consumers understand the nature of their choices, differentiate what factors they need to consider, reduce the information-processing burden, and choose an appropriate strategy for making a decision (Agency for Healthcare Research and Quality [AHRQ], 2002; Hersey et al., 1997).
Society is awash in health information, and patients can quickly find information and advice from many sources. Interpretation of health care information is not a new role for nurses because they have traditionally clarified health care information for patients and their families. Because the Internet allows consumers to search out their own health care problems, nurses are challenged to educate patients on how to obtain valid information for making informed decisions. Two excellent tools for helping patients work through the health information maze are Now You Have a Diagnosis: What’s Next? Using Healthcare Information to Help Make Treatment Decisions (AHRQ, 1999) and Your Guide to Choosing Quality Health Care (AHRQ, 2001). Both of these documents are free on the Web as public domain, so they can be customized for any patient education program. Now You Have a Diagnosis provides consumer-oriented strategies to help patients make decisions that best meet their needs. It includes information about finding reliable information, understanding different types of health care research, making decisions, and getting support for health care choices. Your Guide to Choosing Quality Health Care is based on research about the information people want and need when choosing health plans, doctors, treatments, hospitals, and long-term care. It describes quality measures, such as consumer ratings, clinical performance measures, and accreditation. The Guide describes the purposes of the measures, where to find them, and how to use them. The Guide also has checklists, questions, charts, and other tools to help consumers make health care decisions.
Table 1 offers a number of tips on how to plan and interact with Web-savvy patients and their families.
An important but often overlooked consideration about obtaining and using health information on the Web is the issue of health literacy. Health literacy refers to the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Selden, Zorn, Ratzan, & Parker, 2000). As patients are expected to assume more responsibility for self-care in a complex health system, the importance of health literacy is increasing. Research has identified a relationship between poor literacy skills among disadvantaged patients, including older adults, recent immigrants, and members of minority groups with poor health care and higher rates of preventable disease (Schillinger, Grumbach, & Piette, 2002).
The vast majority of health information on the Web is text, often the same text that is available on fact sheets and patient brochures. Thus, all of the considerations apply related to developing print materials for persons with limited literacy, such as a clear simple writing style, readability levels, layout, and appropriate use of illustrations (National Cancer Institute, 1994). Considerations about font style, size and color, and background color (Echt, 2002) also apply to the Web. The Web adds to these literacy issues the difficulty of accessing appropriate health information due to complex and varying navigation strategies, voluminous amounts of information, and fragmentation.
A relatively recent Web strategy is multimedia. Some people can use multimedia to learn interactively what they might not have learned with traditional print or oral instruction alone. Because Web-based health information technologies are new and change rapidly, current knowledge about the effectiveness of the various strategies and tactics is limited.
Although the gap between the Internet-connected and unconnected is narrowing rapidly (NTIA, 2002), the gap will remain for many of the persons with the greatest health needs. The very poor, homeless, or disabled; those with low health literacy; and frail elders also have the least access to information technology. Providing quality health care to these groups has been an ongoing challenge. Nurses and other care providers must be cautious in their recommendations regarding the use of the Web for health information. First, they must ascertain the individual’s access and ability to use computers and the resulting health information. Computers are available for public use in libraries, community centers, and senior centers. Free or low-cost classes on using computers and the Internet are also available in most communities.
Online Health Information Resources for Older Adults And Caregivers
A Web search on the term “health care” using a popular search engine returned over 5 million sources. Narrowing the search to heart disease returned 2 million sources. Consumers can get understandably frustrated looking for health information on the Web. The problem is not that the information is not available, hut it can take considerable time and perseverance, and the skills of a reference librarian to find the answer to a specific question. In the past 5 years, federal health agencies have been working together to help consumers obtain authoritative, understandable health information on the Web. Knowing that older adults commonly search the Web for health information about certain topics, the National Library of Medicine (NLM) developed a MEDLINEPlus site called Seniors’ Health (Lindberg, 2002a). Seniors’ Health is designed to help elders find appropriate, authoritative health information on a wide range of topics organized in a simple format. It provides access to information produced by the NLM, the National Institutes of Health, and other government, educational, nonprofit, and heath-related organizations. It also includes drug information, an illustrated medical encyclopedia, interactive health tutorials, clinical trails, and the latest health news (see Table 2).
As a result of the success of the Seniors’ Health Web site, the NLM and National Institute on Aging (NIA) joined forces to create a site designed to accommodate the learning styles of seniors called Age Pages (NIA, n.d.). This site is designed specifically for diseases and conditions affecting older adults, their family members, and caregivers. The most recent collaboration between NLM and NIA resulted in the initiation of the NIH Senior Health Web site (NIA, 2002). This uniquely designed Web site provides information in small units with accompanying online video clips designed for older adults and caregivers.
Two additional federally maintained sites for health information are ElderPage and FirstGov for Seniors. ElderPage is an organized collection of resources on health and other issues concerning older Americans, their families, and caregivers (Administration on Aging, n.d.). FirstGov for Seniors was designed to offer members of the public one comprehensive Web site to find the particular federal agency to satisfy their information and service needs (Social Security Administration, n.d.). This site is organized as a gateway for older adults to access virtually any governmental service or activity.
Many of the Web sites that provide health information for older adults are reliable and accurate. The sites listed in Table 2 contain links to many of these quality sites. The Web is dynamic, with sites and pages arriving and leaving every minute. These sites were selected because they are updated and reviewed regularly, and are generally free of advertising and commercialization. They are intended only to be starting points for an individual’s information journey on elder health.
Because of their working relationships with patients and their families, and their traditional roles as health educators and medical care planners, medical-surgical nurses are at the forefront of the health information revolution. Nurses have the responsibility for supporting, guiding, and educating their patients and families to use health information resources effectively. The potential of the Internet to promote health and to foster consumer-professional communications is enormous. Rather than a new challenge, consumer health information on the Web should be viewed as a way to strengthen nurse-patient relationships, empower patients with information and decision-making skills, and enhance the effectiveness of individual and population-based health care.
Tips for Working with Web-Savvy Consumers
* React in a positive way to information consumers provide.
* Provide information about the variability of the quality of
* Guide the consumer to reliable Web sites.
* Recognize that the consumer may have valid information that is
new to you.
* Include the consumer as an active partner in the decision-making
* Inform the consumer about the schedule or time limits of visits.
* Develop a strategy, such as email, for sharing information from
* Follow all confidentiality policies, particularly when
distributing information via the Web.
Source: Pemberton and Goldblatt (1998).
Web Sites for Health Information for Older Adults
Age Page http://www.nia.nih.gov/data/publist.asp
Elder Page http://www.aoa.gov/elderpage.html
FirstGov for http://www.seniors.gov/
Administration on Aging. (n.d.). ElderPage: Information for older persons and families. Retrieved July 28, 2002, from http://www.aoa.gov/elderpage.html
Agency for Healthcare Research and Quality. (2001). Your guide to choosing quality health care. Retrieved July 28, 2002, from http://www.ahrq.gov/consumer/qntascii/qntcover.htm
Agency for Healthcare Research and Quality. (1999). Now you have a diagnosis: What’s next? Using healthcare information to help make treatment decisions. Retrieved July 28, 2002, from http://www.ahrq.gov/consumer/diaginfo.htm
Agency for Healthcare Research and Quality. (2002). Expanding patient-centered care to empower patients and assist providers. Research in Action, Issue 5. (AHRQ Publication No. 02-0024). Rockville, MD: Author.
Echt, K.V. (2002). Designing Web-based health information for older adults: Visual considerations and design directives. In R.W. Morrell (Ed.), Older adults, health information, and the World Wide Web (pp. 61-87). Mahwah, NJ: Erlbaum Associates.
Eysenbach, G. (2000). Recent advances: Consumer health informatics. British Medical Journal, 320, 1713-1716.
Fallis, D., & Fricke, M. (2002). Indicators of accuracy of consumer health information on the Internet. Journal of the American Medical Informatics Association, 91(1), 73-79.
Federal Trade Commission. (n.d.). Operation Cure.All: Introduction. Retrieved July 28, 2002, from http://www.ftc.gov/bcp/conline/edcams/cureall/index.html
Federal Trade Commission. (2001). FTC’S Beales testifies on campaign to combat health fraud and the elderly. Retrieved July 28, 2002, from http://wvw.ftc.gov/opa/2001/09/healthfraud.htm
Health On the Net Foundation. (2000). HON Code of Conduct (HONcode) for medical and health Web sites. Retrieved July 28, 2002, from http://www.hon.ch/HONcode/Conduct.html
Health On the Net Foundation. (2001). Evolution of Internet use for health purposes–Feb/Mar 2001. Retrieved July 28, 2002, from http://www.hon.ch/Survey/FebMar2001/survey.html
Hersey, J.C., Matheson, J., & Lohr, K.N. (1997). Consumer health informatics and patient decision-making. (AHCPR Publication No. 98-N001). Rockville, MD: Author.
Kehoe, C., Pitkow, J., Kate Sutton, K., Aggarwal, G., & Rogers, J.D. (1999). Results of GVU’s tenth world wide web user survey. Retrieved July 28, 2002, from http://www.gvu.gatech.edu/user_surveys/
Lindberg, D.A.B. (1998). Fiscal Year 1999 President’s budget request for the National Library of Medicine. Retrieved July 28, 2002, from http//:www.nlm.nih.gov/pubs/staffpubs/od/budget99.html
Lindberg, D.A.B. (2002a). Older Americans, health information, and the Internet. In R.W. Morrell (Ed.), Older adults, health information, and the World Wide Web (pp. 2-19). Mahwah, NJ: Lawrence Erlbaum Associates.
Lindberg, D.A.B. (2002b). Department of Health and Human Service National Institutes of Health Fiscal Year 2003 budget request. Retrieved July 28, 2002, from http//:www.nlm.nih.gov/about/2003openst.html
National Cancer Institute. (1994). Clear & simple: Developing effective print materials for low-literate readers. Bethesda (MD): NCI; Dec. Retrieved September 22, 2002, from http://rex.nci.nih.gov/NCI_Pub_Interface/Clear_and_Simple/HOME.HTM
National Institutes of Health. (2000). Osteoporosis prevention, diagnosis, and therapy Retrieved August 1, 2002, from http://concensus.nih.gov/cons/111111_intro.html
National Institute on Aging. (n.d.). Health information publication list. Retrieved July 28, 2002, from http://www.nia.nih.gov/data/publist.asp
National Institute on Aging. (2002). NIH Senior Health. Retrieved September 22, 2002, from http://www.hihseniorhealth.gov
National Institutes of Health. (2001). Osteoporosis prevention, diagnosis, and therapy Retrieved August 1, 2002, from http://consensus.nih.gov
National Telecommunications and Information Administration. (2000). Falling through the net: Toward digital inclusion. U.S. Department of Commerce. Retrieved September 15, 2002 from http://www.ntia.doc.gov/ntiahome/digitaldivide/
National Telecommunications and Information Administration. (2002). A nation online: How Americans are expanding their use of the Internet. U.S. Department of Commerce. Retrieved September 15, 2002, from http://www.ntia.doc.gov/ntiahome/dn/index.html
Pemberton, P.J., & Goldblatt, J. (1998). The Internet and the changing roles of doctors, patients and families. Medical Journal of Australia, 169, 594-595.
Pitkow, J. (1997). The WWW user population: Emerging trends. Presented at GlobeCom ’97. Retrieved September 16, 2002, from http://www.gvu.gatech.edu/user_surveys/papers/1997-10/sld00l.htm
Selden, C.R., Zorn, M., Ratzan, S., & Parker, R.M (2000). Health literacy [bibliography online]. Bethesda (MD): National Library of Medicine (Current bibliographies in medicine; no. 2000-1). Retrieved September 16, 2002, from http://www.nlm.nih.gov/pubs/cbm/hliteracy.html
Schillinger, D., Grumbach, K., & Piette, J. (2002). Association of health literacy with diabetes outcomes. Journal of the American Medical Association, 288(4) 475-482.
Social Security Administration. (n.d.). Welcome to the FirstGov for Seniors Website! Retrieved September 16, 2002, from http://www.seniors.gov/about.html
Spry Foundation. (2002). Evaluating health information on the World Wide Web: A guide for older adults and caregivers. Retrieved September 16, 2002, from http://www.spry.org/publications/publications.html
Case Study: Assisting with Osteoporosis
Agnes Carter, a 70-year-old community-dwelling widow, enters the Center on Aging Clinic for a bone density test. She describes an increase in back pain, and the nurse records a half-inch decrease in height while preparing her for the exam. Her family history is negative for osteoporosis. She has a dietary calcium intake of 800 milligrams a day. Before the onset of back pain, she exercised once or twice a week at the senior center. At age 52, she started estrogen replacement therapy for hot flashes. However, after 1 year of therapy, she stopped and never took estrogen again. She is not taking any prescribed medicine but she does take Tylenol[R] 1,000 mg daily for back pain.
When Agnes’ bone mineral density test was measured at the femoral neck, the T score was -2.5. The T score is an evaluative measure used to predict and monitor osteoporotic conditions. It is adjusted for patient age, race, gender, height, and weight in relation to peak bone mass, which occurs between 25 and 30 years of age. The World Health Organization identifies a T score of at least -2.5 (2.5 standard deviations below normal) as diagnostic of osteoporosis. Agnes has osteoporosis and, although she has not yet experienced a fracture, her risk is increased because of her deficient bone mineral density. At this time, she needed a medication to prevent further loss of bone mass (National Institutes of Health, 2000).
The nurse practitioner recommends the National Osteoporosis Foundation Web site (www.nof.org) to Agnes for valid information about osteoporosis diagnosis and treatment, and prevention of falls. During a return visit to the clinic, Agnes affirms the value of the NOF Web site. In addition, the Web site provided information about starting and/or joining an osteoporosis support group in her community.
She discovered the new remedy for osteoporosis suggested by her neighbor was a commercial product and not a valid treatment. Currently, Agnes is using a computer in her community library but she has registered to take a computer class and may buy a computer for home use. After reading a notice posted in the library about upcoming classes offered by Senior Net (http://www.seniornet.org), Agnes plans to inquire about the classes.
Alan VanBiervliet, PhD, is a Professor, College of Public Health, University of Arkansas for Medical Sciences, Little Rock AR, specializing in health informatics.
Patricia Edwards-Schafer, PhD, RN, is a Nursing Faculty Member, College of Nursing, University of Arkansas for Medical Sciences, Little Rock, AR, specializing in online nursing education.
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