Older Adults, Health Information, and the Internet

Bo XieUniversity of Maryland, College Park | boxie@umd.edu

Margaret (not her real name), a 64-year-old, says she is interested in finding out more information about Vitamin D. A recent blood test performed as part of her annual checkup showed that Margaret’s Vitamin D level was low. She has since been tak-ing Vitamin D, following her doctor’s directions. Margaret understands that it is “not critical” that she find out more information about this condition, and from a medical point of view, she is right. After all, the diagnosis has already been made, the treat-ment has already been prescribed, and she is taking the medicine as prescribed. There is really no need for this patient to have more information.

Still, Margaret stresses that she is “simply inter-ested in finding out” more information about this condition because she is “curious.” Like the majority of her age peers, Margaret has always relied on doc-tors as her primary source of health and medical information [1]. Since this situation is not critical, she does not want to make a special appointment with her doctor. She plans to wait until her next regular appointment to see if she might be able to get information from her doctor—although she real-izes that her time with the doctor during an office visit is typically too short, and she tends not to have the time to ask every question that she would like to ask. Meanwhile, since Margaret has been a comput-er user for a few years and has been hearing about all of the wonderful information that is available on the Internet, she wonders, would it be possible to find some information about Vitamin D online?

Margaret had been wondering about this for the past several months but had not actually tried to search for the information on the Internet—until she volunteered to participate in my summer 2007 study of older adults’ health-information behav-ior. When I asked Margaret what factors would affect her decision about whether or not to use the Internet to find heath information, she responded immediately (and quite emotionally): “If I knew how to use it!” She then started laughing, awkwardly:

“That’s the factor! And the fact is, I don’t know how very well.”

I asked her if she would be willing to actually try out her search ideas on a computer and show me her process; she agreed, after some hesitation. She sat in front of a computer, opened Internet Explorer, and when Google came up, she typed in “Vitamin D and absorption.” This search returned 1,400,000 results. She looked at the screen and said, “Okay, I need to do something so that I don’t have this many hits. I don’t know very well what to do, so I’m going to think of something to do.” She paused, and then typed in “Vitamin D and calcium absorption.” This time she got 1,200,000 results. She started laugh-ing awkwardly again while staring at her search results and struggling to try to figure out what to do: “I don’t know what to do now. I’ve got a million two hundred thousand hits, and I guess I just start reading? That’s where I am with it. It just seems like there must be a better way to do something. So at this point I read for a while and I pick one that sounds good... it’s just hit and miss now, and it doesn't strike me as the best way to do any of this, but I don't know what to do.”

Margaret’s story can illustrate several important points regarding older adults’ health-information behavior, and the role and potential of the Internet in helping older adults obtain necessary health information.

First, older adults typically have greater needs than younger adults for health services and infor-mation, yet those needs are often unmet through conventional channels such as physicians and nurses [1]. There is extensive evidence that patients, older or younger, Internet users or not, want to have detailed information about their conditions and treatments, even if they still prefer that doc-tors make decisions about their healthcare [2]. As Margaret has told us, she is interested in having information—that would be noncritical from a medical point of view—because she wants to have

[1] Wicks, D. A. "Older Adults and Their Information-seeking." Behavioral and Social Sciences Librarian, 22, no. 2 (2004): 1–26.

[2] Benbassat, J., D. Pilpel, and M. Tidhar. “Patients’ Preferences for Participation in Clinical Decision Making: A review of published surveys.” Behavioral Medicine 24 (1998):81–88.

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a better understanding of what is going on. Yet doc-tors often underestimate the types and amount of information that patients want, or they lack the time to explain everything. Even if doctors do try to explain, their explanations are often too technical for laypeople to fully understand [3].

Second, the Internet could be an effective alterna-tive source of health information (it’s perhaps an inevitable one). In recent years government agencies (e.g., the National Institutes of Health), nongovern-ment organizations (e.g., medical associations), and for-profit companies are increasingly moving health information and services online. The Web has already become an important source of health infor-mation for the majority of Internet users, and the older population has started to realize the potential of the Internet in meeting health-information needs [4]. Among older Internet users, one of the primary reasons for wanting to use the Internet is to seek health information [5]. Health-information seeking is one of the most commonly reported online activi-ties for older (and younger) adult Web users.

Third, it is important to note that the older popu-lation’s general adoption of the Internet [6] still lags behind that of younger age groups significantly. Even among the small number of older adults who are beginning to use the Internet for health infor-mation, the majority of them lack sophisticated online search skills and strategies that can help them to make maximal use of online resources. When seeking health information online, most people simply start their searches with commercial search engines; very few use authoritative health-information portal websites (e.g., those developed by the National Institutes of Health or medical associa-tions) as a starting point, something Margaret’s case reflects. While Internet users report being skeptical of the credibility of online health information, the majority of them actually pay very little attention, if any, to the date and origin of the health information they find on the Internet [7, 4].

The power of the Internet in providing health information fits well with the paradigm shift in doctor-patient relationships. While only a few decades ago patients were expected to be passive receivers of medical care and doctors expected to be making all of the decisions, healthcare profession-als now encourage patients to be well informed and to play a more active role in their healthcare. This new paradigm can empower patients, improve the quality of healthcare and patients’ satisfaction, and

[3] Bagley-Burnett, C. "Measuring Information-seeking Behaviors and Decision-making Preferences." In Instruments for Clinical Health-Care Research. 3rd ed. edited by M. Frank-Stromborg and S. J. Olsen, 455–471. Sudbury, Mass.: Jones and Bartlett Publishers, 2004.

[4 ]Fox, S. (2006). Online Health Search. Washington DC: Pew Internet & American Life Project. Accessed July 3, 2007 <http://www.pewInternet.org/pdfs/PIP_Online_Health_2006.pdf>.

[5] Morrell, R. W., C. B. Mayhorn, and K. V. Echt. "Why Older Adults Use and Do Not Use the Internet." In Gerotechnology: Research and Practice In Technology and Aging, edited by D. C. Burdick and S. Kwon. New York: Springer, 2004.

[6] Fox, S. (2005). Generations Online. Washington D. C.: PEW Internet & American Life. Accessed March 16, 2007 <http://www.pewInternet.org/pdfs/PIP_Generations_Memo.pdf>.

[7] Eysenbach, G., and C. Köhler. “How Do Consumers Search for and Appraise Health Information on the World Wide Web? Qualitative Study Using Focus Groups, Usability Tests, and In-Depth Interviews.” BMJ 324 (2002):, 573–577.

LIFELONG INTERACTIONsFORUM

EDITORAllison Druinallisond@umiacs.umd.edu

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reduce healthcare costs [8]. While older adults like Margaret have learned—through the mass media, younger family members, and friends—what the Internet can provide, they just don’t know how to make use of the rich resources and opportunities that the Web provides. One reason is that older adults are more likely than their younger counter-parts to lack the necessary knowledge and skills to fully utilize the Internet’s potential. Another rea-son, however, lies in the design of Web interfaces and systems, as they are geared primarily toward younger adults. To fully harvest the power of the Internet to benefit older adults like Margaret, it is important to provide necessary training and better design to facilitate older adults’ learning and use of the Web.

Fortunately, there is some progress in achieving these goals. The National Institute on Aging (NIA) and the National Library of Medicine (NLM)—both part of the National Institutes of Health, or NIH—have developed a set of research-based guidelines for designing “senior friendly” websites (http://www.nih.gov/icd/od/ocpl/resources/wag/docu-ments/checklist.pdf). Following these guidelines, the NIA and NLM have more recently developed the NIHSeniorHealth website (http://nihseniorhealth.gov/), which specifically targets the aging popula-tion. While this site currently lists only a very lim-ited number of health topics (and limited content under each topic), it has a number of special fea-tures (e.g., adjustable text size and contrast, audio files with transcripts, videos with captioning) that make it an excellent starting point for older adults

seeking specific health information for themselves or loved ones. This site also serves as a convenient gateway to the more comprehensive MedlinePlus site (http://medlineplus.gov/). If an older person wants to know more detailed information about a health topic, he or she can easily navigate from NIHSeniorHealth to MedlinePlus to obtain the infor-mation.

This is, in fact, what happened in Margaret’s case: After she showed me how she would search on Google (and fail to find the information she wanted), I introduced her to the NIHSeniorHealth website, which she really liked because of its sim-plicity and ease of use. She could not find informa-tion about Vitamin D there, but one of the health topics, “osteoporosis,” led her directly to the osteo-porosis section on the MedlinePlus site, where she did—very happily—find what she had wanted in the past couple of months. The moral of the story is, there is rich, high-quality information on the Internet. Unfortunately, there is often a gap, espe-cially among older adults, between the knowledge and skills users have and those that they need in order to successfully obtain information. While designers should continue to improve the usability of Web interfaces and systems, educators also need to provide necessary training to increase public awareness of better approaches to access the health information available on the Internet (e.g., starting from a specialized website like NIHSeniorHealth instead of a general search engine).

While many community organizations can play important roles in this training process, pub-lic libraries in particular can be an ideal site for providing such training for older adults [9]. Since September 2007 my students and I have been work-ing with the Prince George’s County Memorial Library System in Maryland to provide age-appro-priate, hands-on, step-by-step training for older adults to learn to use the Internet to find high-qual-ity health information.

ABOUT ThE AUThOr Dr. Bo Xie is an assistant professor in the College of Information Studies at the University of Maryland, College Park. She is also a member of the Human-Computer Interaction Lab (HCIL) at the university. She received her Ph.D. in science and technology studies from Rensselaer

Polytechnic Institute in 2006. Her research and teaching focus on the intersection of older adults, information and communication technologies, and health.

Doi 10.1145/1374489.1374499

[8] McNutt, R. A. “Shared Medical Decision Making: Problems, process, progress.” JAMA 292 (2004): 2516–2518.

[9] Xie, B., & Jaeger, P. T. (in press). “Designing Public Library Computer Training Programs For Older Adults To Promote Technical Skills And Personal Well-Being.” Public Libraries, 47, no.3 (2008).

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The grandparents-in-law of the author, Meredith (88) and Burton (89) Goetz of Tiffin, Ohio, have inspired her to examine the inter-section of technology and aging for the past seven years. Anne Goetz (77), the sister of Burton Goetz, photographed the image.

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