Metaforix@Health - Older Americans, Healthcare, and the Internet: Reactions to the Kaiser Report on e-Health

Lois C. Ambash is President and Chief Infomaven of Metaforix Incorporated, whose services include organizational assessment and planning activities, web site and e-letter content development, and design and delivery of customized workshops for healthcare, education, business, and community organizations. Lois holds a PhD in American Culture and Writing, Master’s degrees in Library/Information Science and Public Policy, and a Bachelor’s degree in English. She serves on the board of the Internet Healthcare Coalition and on URAC’s Health Web Site Accreditation Committee, and is a frequent writer and speaker on e-health, Internet research, business communications, and organizational culture. Read or subscribe to Lois’s blog, Metaforix@.

Last month, the Kaiser Family Foundation released a report entitled “e-Health and the Elderly: How Seniors Use the Internet for Health Information.” The report was based on the results of a “nationally representative, random digit dial telephone survey of 1,450 adults age 50 and older,” 583 of whom were at least 65, conducted in March and April of 2004. Kaiser bills the report as “the first close look at how seniors use the internet for health information – and how that may change in the years ahead as the baby boom generation gets older.”

The report implicitly defined seniors as persons over 65. Of its eleven “key findings,” I would like to highlight these:

  • Less than a third of all seniors have ever gone online and fewer than half have ever used a computer. In contrast, over three quarters of 50-to-64-year-olds have used a computer and 70 per cent have gone online.
  • Over the next decade, as baby boomers age, the proportion of seniors online will increase dramatically.
  • The more affluent, the more educated, and or the younger seniors are, the more likely they are to have gone online, with men more likely to have gone online than women.
  • Seniors say that their doctors are not encouraging them to seek health information online or to communicate with the doctors by e-mail. In contrast, seniors say, drug companies and other health businesses use the internet to market to them.
  • Few seniors use the internet to seek information on Medicare.
  • More than two-thirds of online seniors have looked for health information online. The most popular topics (following prescription drugs) are nutrition or exercise, cancer, heart disease, arthritis, and high cholesterol.
  • Most seniors don’t check the source of the health information they find online.

The report’s authors draw the following conclusions:

·         Because the proportion of seniors online is so small, mainstream media and community outreach are still critical components of health education for seniors.

·         Because the number of online seniors is growing, now is the time to improve health sites by making them more accurate and reliable, more focused on issues of importance to seniors, and more user-friendly in the context of seniors’ physical and cognitive needs.

·         Because so many seniors have found online information unhelpful, better information should be provided.

·         Because so many seniors lack experience with the internet and so many of those are poor, educational, technical, and financial support systems are needed.

·         Seniors must be educated in the specific online health tasks of greatest importance to them, including how to compare prices and services and how to assess the quality and reliability of online health information.

·         Doctors must become more comfortable using the internet with their patients as an educational and communications medium.

·         Seniors must be educated about how to evaluate health-related e-mails and other online health advertising.

·         The Medicare program needs to invest more heavily in non-internet outreach strategies and to improve its online outreach strategies.

Now, I haven’t reiterated these findings and conclusions merely to save you a trip to the Kaiser website and a bit of reading time. My purpose is to point out a number of surprising and, frankly, disturbing aspects of this study. Some of my concerns were touched on by participants in a briefing that took place the day the study was released (you can watch the briefing here or read the transcript), but overall, I found the report wanting in a number of respects. This reaction is in stark contrast to my overwhelmingly favorable opinion of Kaiser’s outstanding research, publications, and websites.

First, a hobby-horse of mine. The report fails to make clear and consistent use of the term seniors and, worse, usually treats all over-65s as a single cohort. Usually, seniors is synonymous with 65 and older, though occasional reference is made to older seniors, meaning 75 and older. For that matter, older Americans sometimes seems to include all people 50 and older, and sometimes not.

This lack of consistency and tendency to lump all older people in a single demographic box is hardly trivial. It begs the question, What does “old” mean to the people whose opinions and decisions set our technological course?

Almost three generations separate 50-year-olds from centenarians (the fastest-growing age cohort in the US, followed by people 85 and older), a fact that this report, like many others, seems determined to ignore or at least to downplay. Marketers targeting desirable young demographic cohorts would hardly abide such lack of precision. When it comes to seniors, despite a projected doubling of the over-65 population by 2030, there’s considerably less statistical slicing and dicing.

Next, a “key finding” so obvious as to be almost ludicrous: as baby boomers age, the proportion of seniors online will increase dramatically. That is, the over-50s in this study, those with so much more internet experience and sophistication, will be redefined as seniors. No mention here that this transition should ease many of the problems highlighted elsewhere in the study and, in fact, redefine the characteristics of online seniors – or perhaps I should say “online over-65s.” In contrast, last year’s Pew report on “Older Americans and the Internet” highlights the likelihood that “tomorrow’s seniors will transform the internet.”

Almost equally obvious: online experience among seniors is positively correlated with greater affluence, more education, younger age, and male gender. Not surprisingly, according to a Pew report issued last month on “How the internet has woven itself into American life,” the same correlations exist in the over-18 population at large. Seniors’ health search topics are also similar to those of the population at large.

Many of the Kaiser authors’ conclusions concerning the need for various kinds of support, training, education, and outreach apply similarly to other populations affected by the digital divide -- which brings me to the briefing at which the Kaiser report was introduced. A number of the comments raised during that discussion were incisive, provocative, and more on target than the tepid conclusions highlighted in the report itself.

Unfortunately, some critical points highlighted in the briefing are absent from the written report. So let me mention a number of them here 

  • Drew Alterman, President and CEO of the Kaiser Family Foundation, notes in his opening remarks that Kaiser has called 50- to 75-year-olds “near-seniors,” a term I do not find anywhere in the report itself.
  • In her overview of the report, lead researcher Vicki Rideout notes the dearth of internet communications between survey respondents and their doctors, as well as doctors’ failure to recommend particular websites. In contrast, she notes, over half have received health-related commercial solicitations via e-mail, indicating that “obviously the commercial community sees a certain potential in the Internet in terms of reaching older Americans that perhaps the healthcare community has not seen.” Nowhere, however, in the report or in the briefing transcript, do I find the word “spam.”
  • Rideout’s overview as presented in the transcript – regrettably, her slides do not appear on the video – includes “ a very quick trip through the Internet from the perspective of a senior just to se [sic] the variation in how the information is presented.” She compares search results for Alzheimer’s disease on Google, ADEAR (the Alzheimer’s Disease Education and Referral Center of the National Institutes of Aging), Yahoo Senior Health, WebMD, Healthfinder.gov, and the new National Institutes for Health SeniorHealth.gov site.

Among the differences Rideout notes in comparing the sites are the likelihood of clicking on an ad as opposed to editorial content; font size (noting, in the case of Yahoo Senior Health, that she herself would have difficulty reading the font); content mix; presence or absence of advertising and sponsored links on the site; and user-friendly design features such as those incorporated on the new NIH site.

  • Trisha Neuman of Kaiser’s Medicare Policy Project reviews the relationship between internet information and the new Medicare “paradigm that involves putting seniors in the driver’s seat.” Asked by moderator and Kaiser Vice President for Communications Jackie Judd about the ease of use of the Medicare.gov information website, Neuman recounts a recent experience of her own. Visiting the site to find a prescription discount card for her father, an Alzheimer’s patient on four prescription medications, Neuman required 40 clicks to “get the right answer.”

After patting herself on the back for not making any mistakes “so it didn’t get blown out of the system,” Neuman asks, “[I]s this information so complex that people will fee[l] sort of paralyzed . . . and in the end will they do in the future what they’ve done in the past, which is to turn to somebody and say, What should I do? Help me make this choice.”

I wish Neuman had gone on to point out the enormous significance this will take on in 2006, when the “Medicare Modernization Act” comes fully into play. At that point, some (younger and healthier) seniors will no doubt be bombarded by marketing communications from Medicare Advantage Plan providers willing to make the choice for them, while other (older and sicker) seniors will likely be left to fend for themselves.

  • Stephanie Daily, educational research specialist affiliated with the National Institute on Aging, discusses the process leading up to the launch of NIHSeniorHealth.gov. Building upon a decade’s worth research into human factors and aging, NIH embarked on a joint project with the National Library of Medicine to create a senior health website whose design would take account of typical age-related physical and cognitive changes.

Based on research, multiple design iterations, and extensive usability testing, the new site was designed to minimize the scrolling that can be made problematic by age-related motor impairments, and also to be “shallow” or “linear,” easing navigation and making it easier for people to keep track of their progress through a site.

In practice, this means that each page is a complete unit visible on a single screen. Users navigate by clicking from screen to screen, with no scrolling required.

Dailey and her colleagues are working with the Center for Medicare and Medicaid Services to translate some of the notoriously complex and difficult-to-navigate material on the CMS site into pages suitable for NIHSeniorHealth. In addition, they have put together a checklist, “Making Your Website Senior-Friendly.”

  • For my money, the most insightful comments came from 70-something Lois Granick, who retired several years ago as director of PsycINFO and Executive Editor of Psychological Abstracts and is now a SeniorNet computer instructor. Granick notes that SeniorNet students are increasingly “younger elderly,” rather than the self-motivated 80-somethings who were the norm a decade or so ago.

Today’s students, mostly women in their early sixties, may be recent retirees or may never have been in the workforce. Granick attributes the demographic change in the SeniorNet student body to the fact that more training programs now exist.  She thinks the greatest incentive motivating SeniorNet clients is to get more information about “aspects of their daily living.” These students don’t usually list health information as their top interest, perhaps because they view health as a private matter that is awkward to discuss in a class setting.

For Granick, the most off-putting experience for seniors new to the internet ‘is that they don’t know when they’ve done something wrong, and when the site has failed them, or when the whole process has failed them.” A useful feature built into NIHSeniorHealth is that the site “is clearly not going to drop them in the middle of a sequence somewhere where they’re way off what they thought they were researching.”

While SeniorHealth presently lacks depth of information, Granick says new online seniors may “simply not be capable of maneuvering through” more complex sites. “Many of us aren’t.” The emphasis is mine. I add it because I so appreciate Granick’s sensitivity to the fact that many navigation problems attributed to age may not be about age at all. They may just be about thoughtless, poorly conceived, and/or inadequately tested site design.

Granick also points out that even with good design and usability testing, most seniors don’t have broadband service and are not likely to spring for it any time soon. They often have old equipment and face other impediments, similar to those confronting non-English-speakers and others, regardless of age. “We really ought to be talking, its seems to me, about newbies, not elderly, necessarily.” Within five to ten years, Granick predicts, newbies will not primarily be elderly – “just people who have not yet learned to use the internet.”

Along with Rideout, Granick stresses the need for structured, well-designed training and outreach. I was also delighted to hear Judd share a recollection of her experience as a CBS reporter in 1982, when the newsroom first became computerized: “I came home and I cried . . . ‘They’re going to fire me! I’m never going to learn this!’ And I don‘t think my reaction is all that different from people over 65.” 

  • Carla Wojnaroski, a vice president responsible for AOL’s Health and Living channels, notes that while over-65s make up only five percent of the AOL audience, most healthcare research is done by women aged 35 to 55 for their entire families – including seniors. For her, this intensifies the challenge of simultaneously meeting the needs of disparate users, a major economic hurdle regardless of whether the funding comes from private or public sources.

However, Wojnaroski seems to equate “sophisticated” with “complex,” saying how difficult it is to dispense information to “a very disparate range of people, some who want very little information presented in a very succinct, compact way, and others who want an extensive amount of information in a very sophisticated user interface.” I’m baffled as to why a “sophisticated” user interface needs to be hard to use. I give you Google.

  • AARP consumer information and advocacy coordinator Grayce Warren-Boulton makes the important point that “many individuals, not just seniors” fail to check the quality of health website information and need quality criteria to guide them. AARP’s criteria “included that it’s non-biased, it’s non-commercial, it’s accurate, it’s timely” [i.e., displays a posting date], and it’s “relevant to the user.” The purpose of the AARP Health Guide – a collaborative project with the National Library of Medicine, Medline Plus, Healthwise, and the Medicare Rights Center, involving both internal and post-launch usability tests -- is to “empower our members and consumers, all consumers, really, to be more actively engaged in managing your own health.”
  • Audience member Anna Poker of the Agency for Healthcare Research and Quality offers a caution against the stereotyping I found rampant in the Kaiser report itself: Different consumers have “different disabilities and different needs,” such as visual impairments, hearing impairments, and cognitive impairments at different ages. “The 80 with a cognizant impairment can be functioning much higher than many 30 year-olds at their peak cognizant level,” so we should avoid stereotyping and design with “multiusers in mind.” Wojnaroski, too, cautions that “label[ing] things as senior” may impede effective communication with new users.
  • Audience member Diane Lewis of ALTA Consulting raises the issues I was most disappointed to see absent from the Kaiser report: telemedicine and disease management. These applications, along with newer applications such as internet home monitoring of elderly people who continue to live independently, are almost certain to become equal in importance to online information seeking.

The briefing offers many additional pearls of wisdom to supplement e-Health and the Elderly. Don’t misunderstand me: this study was a valuable exercise and is well worth reading. But at this point in internet time, after the extensive research done by Pew and others, I was hoping for a more comprehensive and nuanced examination of the relationship between older Americans, the internet, and healthcare – along with clearer, more realistic demographic categories. I am optimistic that these will emerge in future Kaiser studies on this topic.