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Searching for health information online

A research guru whose work I admire was recently diagnosed with a fairly common, chronic health condition. In two lengthy posts to a private listserv, she described how she went about searching online for information about her condition and for support groups she might wish to join.

In her initial post, she stepped through her information-seeking stragegies, showing how she moved from top-level domains containing the name of her condition (for example, the word "diabetes" or "lupus") to more focused search queries yielding more detailed and authoritative information. In the second post, she described her strategies and criteria for locating relevant mailing lists and patient support groups.

The guru came up with an array of authoritative results that anyone researching a medical condition for herself or a family member would be glad to find. In part, though, her success is attributable to her search sophistication and expertise and to the fact that her condition is reasonably common. A novice health seeker in a similar situation might do better to start out at MedlinePlus or use one of the other top ten health sites recommended by the Medical Library Association.

I was particularly interested in the search for online support communities. From my work in e-health, I'm sensitive to how people determine whether to trust the health information they find online. While physicians and other health professionals are often too quick to dismiss patients' ability to distinguish trustworthy information from junk, there are a number of useful quality assessment tools available, such as those posted by the Internet Healthcare Coalition and Discern.

The biggest problem, in my view, is that the quality assessment tools are geared primarily toward "publications" rather than online conversations. (This stems, in part, from ingrained suspicion of alternative treatments and of any interventions not mediated or endorsed by physicians.) As a result, the tools are less useful to patients seeking informed peer support than I hope they will be in the future.

If you're interested in reading some professional literature on the subject, I recommend three articles co-authored by Dr. Gunther Eysenbach, a world-renowned e-health expert who, I find, is much more respectful of both patients and the Internet than many other researchers in the field. Some of the quality instruments he references can usefully be adapted for assessing support groups. The articles, freely available online, are:

- Evidence-based patient choice and consumer health informatics in the Internet Age, from the Journal of Medical Internet Research, of which Eysenbach is Editor-in-Chief;
- Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions, from the British Medical Journal; and
- Ethical issues in qualitative research on internet communities, also from BMJ.

As a social scientist trained in qualitative research, I'm more skeptical of quantitative studies than Eysenbach is, and more enthusiastic about well-designed qualitative studies. Nevertheless, it's critical to give people tools for deciding which digital and human resources are appropriate for their needs. Eysenbach and his colleagues are moving in a good direction.

Another interesting resource is a white paper on "Setting the Public Agenda for Online Health Search" produced by URAC and Consumer WebWatch. (I was one of the invited "stakeholders" who participated in the development of this report, though the final document doesn't fully represent my personal point of view.) The report contains background on how consumers use the Internet to search for health information and how to improve their chances of finding "accurate, reliable, and complete" results. The paper will give you an idea of how a broad-based healthcare industry group views the challenges and possibilities of online health searches.

[Note: This post was signficantly modified on May 24 at 12:10 am ET.]

Testing Gmail

About three weeks ago, a well-connected friend offered me the chance to beta-test Gmail and -- oh, my doubts and scruples! -- I jumped at it. I've learned a great deal since then, as much about myself as about Gmail.

Briefly, a well-designed product, even one that's not quite ready for prime time, can be very seductive. As many others have said, the interface is clean and attractive, the filing and labeling systems are a delight, and large files are transmitted without a hitch. I even got the user name I wanted most -- quite a feat according to the Washington Post , which reports that "people are willing to trade all sorts of things for the right to snag a choice e-mail identity" at sites like Gmailswap.com.

At first, Gmail allowed me to receive messages, but not send them. Later, I could send messages only in response to incoming messages that I had already assigned at least one label (or keyword, designed to retrieve messages). My well-connected friend predicted that I would achieve fame as the person who broke Gmail.

It took ten days for Google to respond to my first help ticket, with the disappointing suggestion that I might have better luck if I traded Internet Explorer in for a more esoteric browser, such as Mozilla or Firefox. By the time they answered my second request, two days later, the problems seemed to be resolved and Gmail was working like a charm.

I'm being careful to use the Gmail account only for non-sensitive messages. I've signed up for e-letters, registered on newspaper sites, and chit-chatted with my daughter. In all honesty, I've barely noticed the ads so far. And for reasons beyond my comprehension, I haven't received a bit of spam yet.

I keep telling myself that this is only a test, a way to acquire firsthand experience with a major cultural phenomenon. Once everyone can get a Gmail account, maybe I'll just give mine up.

But I'd be lying if I didn't admit that Gmail is sorely testing my principles. It's a wonderful product. Google has made a serious attempt to respond to the criticisms levelled by privacy advocates, whose fears have been downplayed by a number of high-profile journalists. The debate, in itself, speaks well both of Google and of the assembled clout of the privacy community.

Legislation pending in California would prohibit Gmail's content-based ad placements without the consent of both the sender and receiver of the message. Such a remedy, if enacted, might be overly restrictive and difficult to enforce. But I'm not yet convinced that the enormous Gmail database will not someday be used for purposes less benign than Google intends.

In the growing enthusiasm for Gmail, I wouldn't like to see the privacy issue swept aside. At a minimum, before people adopt Gmail, they should consider what this free service could actually cost in the end.

Medicare prescription drug card: Too much choice

Last month, I reviewed Barry Schwartz's provocative new book, The Paradox of Choice. The author argues that if people had fewer choices to make and attached less psychological weight to each decision, we might all feel less stressed and more satisfied. As an example of the problem Schwartz examines, I discussed the experience my daughter had when deciding on a health care plan at her new job.

This month, millions of Medicare recipients who lack prescription drug coverage face a similar problem: how to choose among the prescription discount cards available to them between June 1 of this year and January 1, 2006, when the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 takes full effect. Seniors must make this high-stakes decision in the face of complex rules and shifting information. To me, it seems the epitome of "choice overload."

Seniors covered by Medicare who lack prescription drug coverage may purchase a Medicare-approved discount card from a private pharmacy or insurance company. The cards vary in cost, up to $30 per year. Each card issuer determines which drugs will be covered and how great the discount is, ranging from 10% to 25% of retail cost. (Low-income seniors are eligible for a $600 cost subsidy in addition to the discount.)

To assist seniors in determining which card will provide the greatest savings, Medicare has posted an online calculator. The calculator is supposed to return a list of available plans, including formularies and prices, based on the individual's ZIP code and drug regimen.

I tried the online calculator, using the four prescription drugs my husband takes. I had to answer eight questions (including ZIP code) on the initial screen, list the drugs on the second screen, and continue through four additional, densely worded screens before I reached the "Savings Card: Program Comparison." There I found a list of 35 plans that covered all four drugs and were available at retail pharmacies within a half mile of our home. Each plan was valid at up to eighteen pharmacies in the area (presumably listed elsewhere on the site). Card prices ranged from zero to $30 dollars, in addition to monthly drug costs from $208 to $244.

And that's not counting the six additional plans listed under "Programs not in selected area or currently no information available." Or the fact that I could sort the results by card price OR monthly drug costs -- but I couldn't see a result that combined both factors. Or the indescribably confusing results on the following screen, where I landed after randomly selecting a plan so that the program would allow me to continue beyond the screen where I was stuck.

No wonder the seniors John Leland interviewed for his recent New York Times article , "73 Options for Medicare Plan Fuel Chaos, Not Prescriptions," were confused, scared, nervous, enraged, or all of the above.

My only reservation about John's article is that he interviewed only seniors. A younger person might cavalierly assume the interviewees' reactions were due to age or lack of computer literacy. As a computer-savvy boomer with more years of education than I care to count, let me tell you: The online calculator is guaranteed to increase confusion, not promote clarity.

If that's not bad enough, the posted drug prices fluctuate weekly, as highlighted in yesterday's Wall Street Journal. Since seniors are locked into whatever choice they make through the end of the year, Medicare officials are subtly encouraging people to wait until the dust settles.

Judging by the Journal's tips for "navigating the Medicare site," the process is daunting even for its upscale readers. Cautioning that "some Medicare beneficiaries and their families might find the government's drug-card Web site confusing" (my italics), the Journal lists five suggestions that require close attention in their own right. "Intuitive" is apparently a foreign concept to those who designed and approved the online prescription drug calculator.

People who believe that choices like this are a blessing should imagine the following scenario: You're 85 and in failing health. More than fifty per cent of your limited income goes for prescription drugs. You live alone, don't hear well, don't have a home computer, and don't relish the thought of discussing your prescriptions with a staff member at the local senior center or public library.

Now, go to the Medicare site -- pill bottles in hand, as the Journal recommends -- and decide which plan is best for you.

Let me know if you found the exercise any easier than I did.

Informaticon:Neurodiversityfrom The Word Spy, 5/18/04, by Paul McFedries

The neurodiversity movement is based on the belief that there is no such thing as "normal" when it comes to the human mental landscape . . . . Together we display a wide variety of neurological behaviors and abilities, and most of us exhibit some form of mental "disorder" from time to time, albeit in non-debilitating — or "subclinical" — form: mild depression, temporary anxiety, and so on. We accept that the world is populated with people who are tall and small; who are big-boned and bird-boned; who are ecto-, meso-, and endomorphic. So, as the theory goes, doesn't it make sense to also accept that the world is populated with people who exhibit at least as wide a variety of neurological traits?

CEOExpress: To keep or not to keep a favorite online tool?

CEOExpress has been my home page -- the first page I see when I log onto the Internet -- ever since I first discovered it in 1998. The site has been justly praised in many online and print publications for its content, ease of use, and time-saving features.

I recommend CEOExpress enthusiastically to businesspeople and professionals who want a reliable, well-organized portal to an array of online business tools. But the Internet has changed since 1998. So has CEOExpress, and so have I.

Today, CEOEXpress comes at a fairly steep price, if you want to take advantage of the site's continuously improving features and avoid its frequently distracting ads. My research skills have expanded. More tools and applications compete for my software budget.

So I find myself faced with a surprisingly wrenching decision: to keep or not to keep?

A portal "designed by a busy executive for busy executives," CEOExpress, from the beginning, boasted a clean, well-organized interface and a treasure-trove of business, career, and general reference sources. It offered intelligently selected links to general business resources, industry- and career-specific sites, and a wide range of newspapers and magazines, libraries, dictionaries, directories, and travel-planning tools. You could easily customize your home page by adding personalized links to the site's standard categories, and even add new categories of your own.

As time went on, CEOEXpress launched sister portals for journalists, lawyers, and physicians, all easily accessible from the original home page. Soon thereafter, the company lowered the boom: The site was to be divided into a public, ad-supported site with limited features and the subscription-based CEOExpressSelect.

Of course, I became a "charter member" and have twice renewed my membership since then. The Select site now boasts expanded personalization capabilities, a robust e-mail client, and a variety of other "perks" that you can sample for 30 days before you buy. (If you're still reading, I encourage you to take the test drive.) The going rate is $59 per year, with discounts for two- and three-year memberships that bring the annual cost as low as $37.

A couple of weeks ago, a pop-up appeared on my screen, notifying me that my account would expire in six weeks. Then, this week, an e-mail over the signature of CEO's CEO, Patricia Pomerleau, asked, "Did you know that your CEOExpressSelect account is about to expire, 6/15/04?"

Yes, I did know, and I wrote back. Here's an edited version:

I still haven’t decided whether to renew, and I thought you might be interested in what I’m thinking.

The pros: CEOExpress has been my familiar desktop as long as I can remember. I like the fact that it brings together features I would otherwise look for in several places: headlines, weather, an extra e-mail account, a metasearch engine. I like the well-chosen standard links, the associated “research/verticals,” the ability to create personalized links, and the Great Sites. I like the fact that you consistently add features, such as the sticky notes, which I might find useful if I started using your calendar.

The take-it-or-leave-its: I rarely use the “select perks,” with the exception of the Great Site archives. I don’t often participate in the discussion forums. I’ve often thought I might use the mobile phone portal, but I’ve never gotten around to installing it on my smartphone. I’m accustomed to Outlook, for better or worse, so I haven’t taken time to try your calendar and reminder features.

The cons: As a skilled researcher, I really don’t rely on all those links as much as I used to. I rarely use your search engine. I recently tried Onfolio, quickly got hooked, and bought it. I now find myself using Onfolio’s more flexible and capacious filing system where, in the past, I went straight for my personal categories. Your 5 megabytes of e-mail storage capacity can’t hold a candle to Gmail’s, despite Gmail's beta bugs and very real privacy issues, but neither Gmail or CEOExpress will ever be my primary e-mail account. I’m doing more long-distance collaborative projects these days and find myself needing different software applications, most of which have some cost attached.

The bottom line question is, am I better off sticking with your familiar, excellent product on the theory that if it ain’t broke, don’t fix it, or should I spend the $111 cost of a three-year renewal on two or three software goodies that might ease some other aspects of my online life?

If I knew you were about to incorporate a feed reader or a collaborative workspace or some other feature that would save money, time, or inconvenience in the context of my particular needs, I would renew. If you weren’t offering a significant discount for renewals, I would let my account lapse – and I wouldn’t be writing this message.

As things stand, I’m weighing loyalty and familiarity against the fact that CEOExpress is filling a smaller proportion of my daily online needs than it once did.

Please let me know if this feedback is useful. And I’ll let you know when I make up my mind.

Less than a day later, I got a response from Amy, of "Select Support." Here's an edited version of what she had to say:

Thank you for writing. It's always nice to hear what our members are really thinking. I recognized your name as soon as your message came in, and I know you have been a CEOExpress member for a long time.

I want to address a couple of things that set CEOExpress apart from the software options you mentioned. Primarily, the real human interaction. Not only do you get personalized customer service like this, but CEOExpressSelect has a sense of community that your software could not duplicate. We create almost all of our new services based on input from our members.

Should you choose to remain a CEOExpressSelect member, I'd also like to mention One-Click Customization. One-Click allows you to add a button to your browser, so you can add personal links to CEOExpress from anywhere on the Internet.

As I mentioned before, and you noted yourself, we are always adding new features and services. I would love to hear more of your questions and suggestions to help in that process.

Amy is absolutely right about CEOExpress's flair for human interaction. When I've had occasion to contact the site, replies have always been prompt and have had all the hallmarks of genuine human authorship. It's hard to ignore that kind of personalized customer service, especially when it supports a superb product, backed by an ethos of continuous improvement.

i still have a while to make up my mind. Take a look at the site . It may well be perfect for your own needs. If so, it's well worth the cost.

And, while you're at it, let me know what you would do if you were in my shoes.

Community colleges define success by who they include

Al Hunt is Executive Washington Editor and a weekly columnist for the Wall Street Journal, as well as a regular panelist on CNN's "Capital Gang." He and his wife, CNN anchor Judy Woodruff, are the parents of a disabled 22-year-old son who attends Montgomery College in Rockville, MD, a suburban Washington community college.

Hunt's April 29 column focuses on the critical educational and economic role of America's 1200 community colleges. It begins with a quote from Charlene Nunley, president of Montgomery College: "Many of the colleges you read about measure success by who they exclude. We decine our success by who we include."

I'm a veteran of over twenty years in two-year colleges, having worked in various capacities ranging from reference librarian to classroom teacher to academic dean -- so Hunt's column touched me deeply. It highlights the impact of the budgetary cuts two-year colleges face at the federal and state levels, despite President Bush's recent declaration that community colleges are "the cornerstone of good economic policy."

As a community college faculty member and administrator, much of my work was with adult women returning to college, often highly intelligent and resourceful people who went straight into the workforce after high school while their brothers went on to college. In some cases, these women returned to school over the their husband's objections, causing great stress on their marriages. Other times, they were thrust back into the classroom by unplanned circumstances that threatened the family's income: a husband's sudden unemployment, illness, or death; a divorce; or an employer's clear signal that they had reached the end of their career paths without the magic of a college diploma to propel them further. In addition to returning adult women, I also worked with younger students who had frittered away their high school years and were seeking a second academic chance, students who had various disabilities or who spoke English as a second language, and senior citizens who were finally seeking the education they had long aspired to.

During part of my tenure in two-year colleges, my own children were applying to, and then attending, highly selective colleges. Having missed the Ivy League education my brother received, I was determined that my children have the opportunity for the lifetime "ticket" that comes with an elite educational pedigree. I was glad they could benefit from such privilege. But, at the same time, I became increasingly aware that community colleges provide some of the best teaching available in our country, in the liberal arts as well as in vocational areas.

The primary mission of two-year colleges is teaching, not research, and many students' lives are profoundly altered as a result. I mean their interior lives as much as their economic prospects, their perspectives on the world as citizens, parents, community members, and custodians of our collective cultural heritage.

Two years ago, when my mother was hospitalized after a stroke, her Master's-degreed physical therapist turned out to be a former student of mine. And the day Hunt's column appeared in the paper, I received an e-mail from another former student who went on to earn Bachelor's and law degrees and now has a flourishing solo practice.

Community colleges, in other words, are more than "the cornerstone of good economic policy." They are also cornerstones of personal and community enrichment. Hunt's column eloquently attests to the critical need to support community colleges with public dollars, not merely with rhetoric.

In marshalling evidence for his case, Hunt points out that this year, California's 108 community colleges "have had to eliminate over 8,000 courses and deny [seats to] about 90,000 prospective students," owing to a 10% reduction in state funding. At the same time, fees rose 60%.

Two weeks later, a study released by the California Community College system and the Center for Law and Social Policy offered dramatic evidence of what gets lost -- both for individuals and for society -- when such cutbacks are allowed to happen. As reported in the Chronicle of Higher Education, researchers examined the "employment rates and median earnings" of "female welfare recipients who left one of California's public community colleges, with or without a degree, during the 1999-2000 academic year."

Two years after earning an Associate's degree, the median income of these women was five times higher than it had been before they started college, rising from about $4,000 to about $20,000 per year. Women who earned vocational certificates saw a threefold increase in income over the same period. Incomes were higher for students whose vocational programs required greater numbers of credits.

The study's lead author, Anita Mathur, told the Chronicle, "This study shows that allowing welfare participants access to postsecondary education is a shrewd, longterm investment."

As Hunt's column and my own experience attest, investing in two-year colleges is also a shrewd social and economic investment for working and middle-class Americans around the nation.