Journal of Gerontological Nursing

On-line Communities: Helping "Senior Surfers" Find Health Information on the Web

Georgia A Moore, MSNed, RN, BC

Abstract

ABSTRACT

Currently, it is estimated that approximately 10 million older adults use Internet communities to gain information on any health issue. It is nearly impossible to police all of the sites available to make sure correct information is distributed. A short website review demonstrates factors that create an unsafe or safe health environment. The ability of a facilitator to properly manage an online community and the problems that may be encountered in this setting are issues that warrant attention. Discussion forums provide information through threaded discussion boards, and frequently the information is inaccurate. Research is needed to determine if on-line health communities are a bane or a boon to the elderly population.

Abstract

ABSTRACT

Currently, it is estimated that approximately 10 million older adults use Internet communities to gain information on any health issue. It is nearly impossible to police all of the sites available to make sure correct information is distributed. A short website review demonstrates factors that create an unsafe or safe health environment. The ability of a facilitator to properly manage an online community and the problems that may be encountered in this setting are issues that warrant attention. Discussion forums provide information through threaded discussion boards, and frequently the information is inaccurate. Research is needed to determine if on-line health communities are a bane or a boon to the elderly population.

Many elderly individuals use the Internet to gain health information. Although it is a positive wellness initiative, it can also be dangerous. The "senior surfer" must be aware of how to recognize the validity and quality of a website before attempting to act on the information.

In 1900, the 65-and-older age group in the United States was approximately 3. 1 million. As of 2003, this number had risen to 35.9 million, and it is projected to exceed 71 million by the year 2030 (Administration on Aging, 2005). A survey by SeniorNet revealed that 42% (14.7 million) of elderly individuals use the Internet for news and events, and 70% research health information and access forums, discussions, and chat rooms (Senior Journal, 2003). These figures represent a growth of 84% from 1998.

In contrast, a simple search using only the words "senior health" revealed 161,000,000 websites pertaining to myriad health issues (Google, 2005). The elderly population currently has access to health care issues through many communities, but interpreting and using the information incorrectly may lead to emotional and physical vulnerability. Understanding an on-line community and how it is facilitated, and determining quality and validity and safety factors will enable elderly individuals to use health websites wisely.

WHAT IS AN ON-LINE COMMUNITY?

An on-line community consists of individuals with common interests or a need to exchange information. Most virtual communities, just as their real counterparts, have rules, protocols, and standards for the members. The one basic need for an on-line community is computer access. That access can be in the form of a full-size desk computer, a traveling laptop, a handheld personal data assistant (PDA), or even a telephone. As long as the learner can connect to the Internet, a wide range of health material can be accessed (Preece, 2000).

On-line communities, whether residential or at a school, have learning and teaching in common. Most residential communities have "soft boundaries" and members join at will and participate on an "as needed" basis. The strength of the community relies on the interactivity of its members. The interactivity can include discussion threads, review of material, or live chats (Jonassen, Peck, & Wilson, 1998). Elderly members of these communities are often seeking health information and are becoming more knowledgeable about their personal conditions and medications prescribed for treatment.

An older adult, identified as Ms. L, used a grief message board to seek help with her mother's illness and received advice on the medication to use to ease the dying process. After being homebound for 7 years, Ms. L said "her on-line community helped ease her problems with her health and her mother's illness" (Rigdon, 1994, p. Bl). During her message sessions, she also mentioned being partially deaf and a member of the community assisted her with information on a telephone that would amplify sound. The support received by this individual has made a profound difference in her life that would not have been possible without the Internet (Rigdon, 1994).

WEBSITE REVIEW

A review of current websites related to elderly communities defines the types of health communities that are available, the facilitators of the communities, and the kinds of problems encountered that could affect the emotional and physical safety of the elderly members.

Types and Uses of Elderly Health Communities

Many different types of health communities are available for those in the 65-and-older age group seeking health-related information. AARP, a national nonprofit membership organization of adults 50 and older, hosts a community that informs its readers about changes in government health policies. Healthfinder.gov guides a senior surfer to health information communities from government and other sources. Among the subjects found on elderly health communities were air pollution, hearing loss, and medical quackery. A physician or details on a specific ailment can also be located through Web browsing (Wiener, 2002).

Using Google (www.google. com), a popular search engine, the words "senior health" were used to locate health communities on-line. The search revealed 161,000,000 different communities all related to elderly health topics. Another search using "senior health scams" as the topic on the same search engine brought forth 781,000 communities.

A second search engine, Yahoo (www.yahoo.com), popular because of ease of use, yielded 117,000,000 communities using the same search phrase. However, the senior health scams topic listed 957,000 communities. Both search engines were relatively close in the number of community finds, however, offered many different types of community sites.

Novartis (2003), a prominent pharmaceutical company offers information about diseases, medications, products, and news articles. The site also has shown accommodation for elderly individuals by offering large print text by clicking a button. Another site (www.dmoz.com) offers even more choices, 958 to be exact, when the site titled: Open Directory: Health is accessed. From this site, open discussion boards can be accessed to become part of an online discussion on health topics of choice (DMOZ, 2005). Senior Living (2003) offers discussions about health, aging, social problems and other areas of interest. In these discussions, elderly individuals can compare health stories or ask questions of each other pertaining to health problems.

Rigdon (1994) identified another use for the Internet health communities:

Senior citizens are using the anonymity of cyberspace to overcome health problems that would otherwise keep them isolated and lonely. With a keyboard and modem, the hard-of-hearing never miss a word of the conversation, and the homebound can get "out" to see friends, (p. Bl)

An area that has a wide use of anonymity is the chat room. A chat room in a health community should have a moderator if possible. It is also important that the site print a disclaimer that warns of the possible inaccuracy of information (GROWW, 2003).

Who Facilitates the Health Communities?

A facilitator (or moderator) should make sure everyone is heard, make the community feel comfortable by greeting everyone, and encourage communication among the participants (Education Development Center, 2000). White (2004) describes the on-line facilitator as "the convener, online community owner, or someone designated by the community owner." In on-line health communities, facilitators are usually unpaid volunteers. The volunteer acts as the "social host" or "social innkeeper." The facilitator's job is to make sure everyone feels comfortable enough to participate in the community.

The second role of the facilitator, White (2004) explains, is the referee. This is to monitor the community and make sure that community members follow rules and procedures. The referee has the ability to delete postings or keep someone from posting in a community environment.

The final role White describes is the janitor, with the role of clean up. In this role, the facilitator archives data, redirects activity that might be in the wrong area, and keeps the community neat and tidy by deleting inappropriate posts and monitoring out-of-date material. Many sites were visited and found to have no facilitators. Facilitators are often the developer of the website or chat room, or they may be an individual hired by the Web developer for their expertise on a certain topic. If the facilitator has expertise in the discussion area, credentials should be displayed on the site. The validity of a facilitator can be checked in the following ways (Rippen, 1997):

* Is the facilitator associated with a reputable organization?

* Is the facilitator an expert in the field?

* What are the facilitator's credentials and reputation?

Sponsored sites were common from various pharmaceutical companies with discussion areas. Government sites offered information, but no discussion medium. Organizations (e.g., AARP) offered discussion boards, but no facilitator. A board viewed on the subject of "obesity" had 143 entries, all advising each other on weight loss diets, reasons for weight gain, and even diabetic advice for weight loss, but had no professional to resolve misconceptions (AARP, 2003). The dangers of an unmonitored health community for older adults who have multiple health problems are numerous and can be devastating (White, 2004). Without a facilitator to monitor the discussion, an individual who is ill may gather incorrect information on how to treat their health problems.

Quality and Validity of Health Communities

Rippen (1997) identified specific criteria for establishing validity of health information on the Internet. Health information related to wellness, disease, and treatment, or products and services related to these topics were the focus of the research. Examples of misinformation included links from one site to another implying endorsement of the new product, information, or service.

Within the vast health information network, elderly individuals cannot be assured of the quality of information. The lack of quality assurance of the online health communities can cause elderly individuals to ignore symptoms or rely on unproven treatments. Criteria to ascertain the quality of a health community included reference to physicians (although it was agreed that "physicians online are only credible until proven otherwise" [Rippen, 1997]), wellknown organizations (e.g., public health communities and consumer advocacy groups), hospitals and other heath related facilities, and government-related health organizations. The highest degree of credibility was given to communities affiliated with medical schools of recognized universities. This is because schools need to maintain a current knowledge base for teaching, and therefore, would be able to disseminate valid health information (Rippen, 1997).

Suggestions were made during the research process to provide credentials on a health community site, but an immediate drawback would be validating the credentials, and it was determined that the general public (i.e., elderly individuals) did not have the scientific educational background to make an informed decision about offered material. Sites that offer free registration should be questioned because many are not endorsed by legitimate health providers and facilitation is rare (Rippen, 1997).

Another factor deemed important was the date of the article when considering the fast-paced changes in treatments and medicines. Many sites were found to provide no date. Another concern was medications changes, because using outdated information could have devastating effects. An older adult may use this outdated information to obtain medicine via an on-line pharmacy, many of which are out of the United States and sell medications that have been removed from the American market. Rippen (1997) also presented a warning that:

consumers should always be highly skeptical of claims of "amazing results," "earthshaking breakthroughs," or the "secret cure" known only to the purveyor. Likewise, they should be wary if basic science, widely accepted medical principles, or sound public health policies are attacked.

The source of the material presented in an on-line community is another quality indicator. Other indicators that a site is of good quality is when information is provided by an author with credentials and documented expertise, or when a site maintained by a focused organization (e.g., The National Diabetes Organization for information on diabetic ulcer treatment). Anonymous postings of health information should always be questioned because validity cannot be confirmed (Sidebar above).

Rippen (1997) also suggested a Health Care Code of Conduct (HONcode) for communities on the Internet (Sidebar, page 46). Many sites use rating tools; however, there is not an established tool to assess health community sites. A symbol for the code of conduct could be included on quality health communities, and if the symbol is not present, the elderly reader would know that the material might not be valid.

The research on unscrupulous health communities was reinforced by the E-Commerce Times (Enos, 2000). Enos (2000) reported that the Federal Trade Commission (FTC) had identified three companies that were falsely promoting cures for diseases (e.g., AIDS, cancer). The FTC stated that 400 health communities on-line had been closed in 1999 for using questionable products and claiming to cure diseases. In Oregon, a physician practicing on the Internet was fined and put on probation for prescribing a medication without first examining the patient (Enos, 2000). Similarly, Slud (1999) reports the unethical practices of physicians doing e-mail assessments and never meeting their patients face-to-face.

The National Council Against Health Fraud [NCAHF] (2003) is a volunteer organization that monitors communities for fraud, abuse, and quackery pertaining to health information. Another monitoring community, Quackwatch (Barrett, May 2003), is facilitated by a physician, Stephen Barrett, MD. Dr. Barrett provides information on health scams and provides links to valid health communities. Dr. Barrett is a retired psychiatrist, and the vice-president of the National Council Against Health Fraud (Barrett, November 2003). The HONcode emblem is displayed to validate the contents of the site.

ARE HEALTH COMMUNITIES SAFE FOR ELDERLY INDIVIDUALS?

Many health communities are unreliable sources of information. For example, the Internet Fraud Police (IFP) reviewed an Internet article by Nancy Markle (cited in International Food Information Council Foundation, 1999). The article read, "Aspartame (a sweetener found in food and beverages) causes lupus, multiple sclerosis (MS) and other diseases and conditions" (International Food Information Council Foundation, 1999). The claims Markle made about aspartame had no scientific validity (International Food Information Council Foundation, 1999). "Highly respected health professional organizations were fraudulently associated with the story, and numerous vulnerable individuals were needlessly frightened by this scientifically false allegation," according to the International Food Information Council Foundation (1999).

Dr. Barrett facilitates a frequently-asked-question community in an attempt to dispel myths and help elderly individuals avoid sites that are unscrupulous or ambiguous in their advertisements. For example, in 1995, the Pennsylvania Attorney General won a court case against a Canadian company marketing bromelain for weight loss. Dr. Barrett, through Quackwatch, indicates that this enzyme should not be used for weight loss. It is a protein that is not absorbed by the human body in the bloodstream (Barrett, 1999).

Eysenbach and Diepgen (1998) used a fictitious e-mail to research advice from physicians on the Internet about a severe health problem. The e-mail was sent to 58 health sites addressed with a follow-up questionnaire from a different address. Respondents were asked how many e-mails were received weekly, the response policy, and personal views on Internet health services. Only 26 of the respondents stated they were physicians; however, all but 2 of the 58 sites advised the fictitious individual to see a doctor. Of the respondents, 18 mentioned a diagnosis, but 17 were specific in naming the problem. Of the 17, five respondents gave information on specific medications to use for the problem. The conclusion related to the research by Eysenbach and Diepgen was:

The study found a striking lack of consensus among medical information providers on the theoretical and practical handling of unsolicited patient e-mail messages and their judgment of this topic. About one third of those who replied explicitly refused to answer patient requests individually, arguing that it would be impossible to make a diagnosis via e-mail without an examination, as well as arguing that they lacked the resources and/or mandate to reply to these kinds of inquiries. The remaining two thirds attempted to help individually, 5 of whom gave detailed treatment advice, (p. 1334)

The study suggested that patients approaching unknown physicians to request e-mail advice need to be aware that there is no guarantee that such information will be accurate, timely, or appropriate. Eysenbach and Diepgen (1998) also found a problem with confidentiality and secure use of on-line health communities for medical diagnoses. A fear of the e-mail not reaching the intended recipient was discussed, with no solution suggested. Another area of concern was language interpretation. Because the Internet is global, the research indicated that language misinterpretations could also lead to misdiagnosis and faulty information. Eysenbach and Diepgen advised that protocols and policies were needed that would be universal to all health communities on the Internet.

In a consumer publication, Driedger (1998) emphasized that the U.S. government, in the fall of 1998, had "found more than 400 Websites containing false or deceptive advertising claims for treatment of heart disease, cancer, AIDS and other illnesses" (p. 46). Driedger interviewed physicians who acknowledged that "they cannot always distinguish between authentic science and snake oil" (p. 46) in Internet health communities. Dr. Breeck, a Montreal family physician said in his interview, "There are a lot of Websites that I didn't figure out were commercials until the end, and when you are ill, you are vulnerable" (p. 46). Another physician interviewed said "the suggestion that a physician can make a diagnosis and prescribe over the Internet is horrendous" (P- 46).

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The American Dietetic Association (Ayoob, Duyff, Quagliani, & American Dietetic Association, 2002) has also warned consumers about health and nutrition information on the Internet. Reminders that the accuracy of information appearing on websites is not governed by any regulatory agency and sites featuring sound science-based content coexist with sites containing questionable, inaccurate, or alarming information promoted by individuals and groups advocating unscientific views. Also recognized were the chat rooms, listservs, and electronic bulletin boards that are not supervised by qualified health professionals and provide a forum for the exchange of inaccurate advice about nutrition and health. E-mail, another form of communication related to health care, "has resulted in rapid and widespread dissemination of false nutrition and health-related stories" (Ayoob et al., 2002, p. 262).

An example of a false nutrition story spread to consumers is that "bananas from Costa Rica carry flesh-eating bacteria, and that the sweetener aspartame causes numerous ills such as multiple sclerosis and lupus" (Ayoob et al., 2002, p. 262). Bananas are a high source of potassium that older adults are encouraged to eat, and many elderly individuals with diabetes use aspartame instead of sugar as a sweetener, yet a health community advised them that both were dangerous. The health of elderly individuals is in jeopardy if they are given false information because prompt, appropriate treatment may be delayed, causing irreversible harm (Ayoob et al., 2002).

SUMMARY

A review of on-line Web communities shows an increasing number of senior health sites, but the validity of the sites is questionable. Some of the communities are starting to show the HONcode emblem that was instituted by Rippen (1997), and these communities are quality checked for accurate information and legitimate facilitators. It was also recognized that very few of the communities have facilitators in the chat rooms or on the message boards. Most of these areas are questions and answers by the participants of the community, and the information provided is experience related. Many of the communities sponsored by pharmaceutical firms have physicians answering the questions, and some physicians are starting to sponsor communities to provide quality health care information to elderly individuals.

Nurses can warn patients about health care sites and chat rooms. Patients should always be told to check with their health care provider before any new medications or treatments are used. Nurses can provide elderly individuals with a checklist to instruct them how to use health websites wisely, and a list of quality senior sites can be provided (Sidebar above).

A prevalent problem with online communities is invalid information, quack advertisements, and confidentiality issues. Until all of these problems areas are resolved, older adults accessing on-line health communities will remain at risk for improper or delayed treatment that could ultimately jeopardize their health.

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