Improving Medical Communication Online
June 29, 2006
Summary: Medicine has not made full use of online information -- and doing so might save thousands of lives. Part I looks at what has been most successful online in other fields, for background on how medical information could be improved.
In the past few years some Web sites have become enormously successful, providing services useful enough to attract many millions of visitors, and with no need to advertise. (When was the last time you saw an ad for Google?) This communication revolution builds largely on information contributed by multitudes of users -- not just by a few celebrities or by management. Information is the lifeblood of science and medicine; a similar revolution in medical communication could be worth billions of dollar a year by making all of medical research and medical practice more effective -- while saving thousands of lives, and improving the everyday health of millions.
Medicine has its own needs and must find its own way, not simply follow what works elsewhere. A key difference is that medicine and science rate information based on the authority of expert peer review, while many successful Web sites use other forms of popularity for their ratings.
But imagine a world where individuals could choose among many different flavors and philosophies of expert review, and mix or change these "views" of the universe of available information at any time. Also, informal recommendations by many different experts, public figures, organizations, and others could help everyone manage information overload, by combining expert and popular referrals to help people find what they most want or need, and what others in their situation have found most helpful.
These reviews and recommendations could help individuals navigate an AIDS conference -- or recent scientific or medical publications -- or the entire body of information published on the Web as it relates to a particular medical need. Important work even by unknown authors could be widely recognized immediately, if it is accurate and uniquely useful.
Our next issue will propose such designs for medicine. Here we look at sites that already work very well online in other fields, to see what can be learned from them.
Successful Internet Models
Some online communication system to look at (but not necessarily copy for medical use) include:
Wikipedia (www.wikipedia.org), the free online encyclopedia written by volunteers, has much more information than Encyclopedia Britannica and is almost as accurate, according to a recent study by the leading science journal Nature.1 Wikipedia now has over 4,000,000 articles in 200 language editions -- about 1.2 million in English. No one thought that an encyclopedia could be written that way -- not even those who started this one, as an afterthought to another project. Wikipedia is now the 11th most popular Web site in the U.S. and the 16th most popular in the world (2006-06-21), according to Alexa's rankings.2
The Wikipedia concept should also be applied to free or low-cost online textbooks as well, to greatly improve medical and other education around the world. Student would not have to pay hundreds of dollars a year for books, developing countries would have access to the world's best, and teachers could create custom views tailored for their classes, and share these views with colleagues around the world. Copyright restrictions would largely go away, and students could study anywhere from print, iPods or other portable media, or their computer screen. Those getting rich on overpriced textbooks could find something else to do.
A June 17 article in The New York Times describes how Wikipedia deals with the disputes, fights, and vandalism that occur from letting anyone online in the world write or change entries in so influential a publication.3 What most surprised us is that Wikipedia had to restrict fewer than 300 articles out of the 1.2 million in English -- and most of these had only the mild restriction of limiting editing to users who had registered at least four days prior, and even that is often temporary. While anyone can write or change most entries, in practice Wikipedia is mostly written by a community of about 1,000 volunteer writers and editors around the world, who have nominated each other and built relationships of trust over time.
Craigslist (www.craigslist.com), like Wikipedia a non-commercial site, has become the world's biggest classified advertising system in any medium. (Alexa ranks Craigslist as 7th most popular in the U.S.)
YouTube (www.youtube.com), which lets people put their own videos online to share with anyone, became one of the most visited sites on the Internet within one year. It followed the success of Flickr (www.flickr.com), which similarly let people publish their photographs. (Alexa rates YouTube as 19th most visited in the U.S.)
MySpace (www.myspace.com), an Internet site widely used by young adults, has over 80 million user accounts, and is the third most visited U.S. site according to Alexa. Probably a fraction of users (but still millions of people) account for most traffic. How did this site become so popular?
MySpace was started by software experts to provide their friends with the computer facilities they wanted. All in one place people can set up their own user profiles, Web sites, blogs, social networking, forums, and good ways to share their own work in music, videos, photos, and other media. While the pioneering social-networking site Friendster marginalized itself by fighting its users, MySpace cooperated and gave them most of what they wanted (with important exceptions, such as the very limited opportunities to earn income on the site).
In July 2005 MySpace was purchased for $580 million by Rupert Murdoch -- the media tycoon famous for using his journalistic properties as shills for war in Iraq,4 supposedly to give the world $20 oil (it is now over $70), but more likely in trade for U.S. government favoritism toward his empire.
Note that the MySpace "Terms & Conditions" (May 1, 2006 version) prohibit "any telephone numbers, street addresses, last names, URLs or email addresses" being posted or transmitted on the service -- making users more vulnerable to excommunication by making it harder for them to integrate their MySpace world ("a place for friends") with the rest of their lives. In late March 2006, MySpace said that it had removed 200,000 user profiles that it considered objectionable (for either hate or love, according to news reports -- "hate speech" or "too risqué" -- though probably no one outside the company has a good picture of what happened).
Two hundred thousand people may not seem like many for a site gaining 250,000 new users per day. But it gives the company influence over millions, by establishing a threat of disconnection from part of their lives. And MySpace gains more influence by publicizing whatever user activities it wants on high-traffic pages -- highly valued rewards on a site that is all about attention. Users who want to succeed there will assume they should not cross Murdoch or the corporate establishment he represents, either on MySpace or anywhere else.
The shadow over the future is ominous. If it becomes smart and sophisticated to accept abuses such as massive promotion of a war for personal business interests, what kind of world will we leave to future generations?
The fundamental problem is private ownership of human communities -- digital company towns where the owner has absolute power, and the entire history of due process and personal rights in human society does not apply. How much of their lives will people put into such things? That depends on the alternatives available. In later articles we will look at strategies for reducing dependency on the new company towns, whether or not one chooses to use them.
Google (www.google.com) has become one of the largest and most profitable media companies in the world, mainly on the strength of its central innovation, a rating system that shows people the most linked-to Web pages first (popularity among writers of other Web sites, weighted according to the importance of those sites). And Google had the insight to realize that a search string enabled the targeting of advertisements, greatly increasing their value to the public and therefore to the advertiser.
Yet Google remains vulnerable despite its great wealth, because searchers could leave in a moment if anything more useful came along. For example, Ask.com (www.ask.com) uses link popularity among expert sites, instead of link popularity in general as Google does; a search for "HIV" returns a more useful top 30 sites (not counting the advertising at the top and bottom) compared to a Google search. And on May 1, 2006, Amazon.com (including Alexa) announced that it dropped Google's search for Microsoft's.
Google could end one vulnerability by fixing its handling of dates -- so you could see the top 100 or whatever sites in order with the most recent significant updates first, instead of seeing the last five years or so mixed arbitrarily together. The right way to do this is also the easy way -- fix the whole Web. Google has the influence to standardize dates throughout the Web, by announcing that it would give search priority to pages that had an honest date in the international date format, yyyy-mm-dd5 -- at least when users asked to see sites by date. The sites that account for the great majority of search results care greatly about their Google search position, and would quickly standardize their dates if necessary to gain this advantage. (Google's Advanced Search has a simple date test, but it does not work well; for example, a search for "Pennsylvania" found 9,000,000 more pages dated in the last six months than dated any time, as of 2006-06-29 -- note that the date-range numbers change frequently.)
In Alexa, Google ranks as the second most popular Web site among U.S. visitors, after Yahoo, (not surprising since Yahoo has traditionally offered a wider range of services, while most people only use Google for search).
Note that all these very successful sites are free, and all of them give users lots of valuable information and a good experience without making them register first. Usually visitors do need to register or sign up in some way before publishing their own comments or other information on these sites, but typically such sign-up is minimal: make up a user name and password, provide an email address that must work, read a few funny-looking numbers or letters to prove you are a person not a robot, and confirm as instructed by email. Or just be signed up already at a cooperating site.
For more information about these and other online communication systems that have been most successful recently on the Web, see the special section "Among the Audience" in The Economist.6
Part II of this article will look at major problems in medical communication today, and explore possible improvements.
Giles, J. Internet encyclopedias go head to head. Nature. December 15, 2005; volume 483, pages 900-901. For a BBC news report, see
Alexa, owned by Amazon.com, lists traffic rankings for the top 100 sites in each of over 70 countries; it gets the information by offering people a toolbar that provides additional search help, in return for automatically reporting users' Web use to Alexa. Visit
www.alexa.com/site/ds/top_500 and click "United States" or one of the other countries, or click "See more Global Top 500."
You can get the Alexa traffic ranking for almost any Web site -- and see the top sites its visitors also visit. At www.alexa.com click the "Traffic Rankings" tab. Type the site you want to check into the box, and click "Get Traffic Details."
These rankings are not perfect, due to self-selection, operating-system, and other biases in who uses the toolbar that reports the Web sites they visit. But the information is free, easy to use, and good enough for many discussions.
"Growing Wikipedia revises Its 'Anyone can edit' policy," The New York Times, 2006-06-17.
"Their Master's Voice," The Guardian (UK), 2003-02-17;
"The Murdoch Interview" is here.
On the ISO International Date Format, see
"Among the Audience," The Economist Survey on New Media. For free access, click "our survey" (highlighted in the subtitle) for the first article, then choose articles or interviews in the column on the right.
Copyright 2006 by John S. James. See "Permission to Copy" at: www.aidsnews.org/canhelp/.
This article was provided by AIDS Treatment News
. It is a part of the publication AIDS Treatment News.