The idea of providing health information on the Internet never really
went away, it just had a little relapse.
One of the Web’s most well-known health sites —
DrKoop.com, founded in 1997 by former U.S. Surgeon General C. Everett Koop — set a
bad example when it had a much-publicized heart attack.
The site went public in 2000 and at one point had a market value of more than $1 billion.
But the company foundered and was delisted by Nasdaq only a year later. The site name
was purchased for $186,000 by Vitacost and the brand is now operated by a group
The good news for health consumers — which ultimately includes all of
us — is that reliable health-care information is becoming more widely
available than ever. The upshot of this may be of great significance to you or your company.
New Entrants Offer Expanded Health Info
Three sites typify the new wave of health portals that are changing the way people
get information about diseases, medications and treatments:
• PatientInform.org has just gone live as a pilot project to
unearth health research that might otherwise remain buried behind fee-based
subscription services. The site is a joint effort of the American Cancer
Society, the American Diabetes Association, and the American Heart Association.
• MammaHealth.com launched just yesterday as a specialized offshoot
of Mamma.com, a Web search engine. The new health site “has harnessed the power
of the Deep Web by hand-picking the most relevant medical sources for credible
health information and crawling deep into the content these sites provide,”
according to Nicole Festa, a company p.r. representative. “You can simply type
in the word diabetes and instantly get back credible information,
not disorganized results leading you to sites trying to sell you
pharmaceuticals or information from dubious sources.”
launched in January as a serious attempt to respond to search queries with
informative articles rather than unrelated lists of links, à la Google.
Although the site isn’t limited to health concerns, it does quite a credible job on
medical topics, providing a series of articles from established reference
Of these three efforts, PatientInform.org is the most interesting. That’s because
it represents a ground-breaking attempt to wrest medical research studies from
publications that otherwise charge hefty subscriber fees to read them.
Information Wants To Be Free
Ironically, you can’t go to PatientInform.org and type diabetes or any other
keyword. Instead, PatientInform is more like a code name for the information-liberating campaign of the three health groups sponsoring it. These
nonprofit associations are determined to make research studies available to the
people who need them, free of charge, no matter who may own the original, copyrighted material.
“What PatientInform is adding is one important part,” says David Sampson, a
media relations representative for the American Cancer Society.
“We link to the actual study, which is normally blocked off behind a subscription
Some medical publishers won’t allow any cost-free links to the studies they
publish. But because of the prestige of the nonprofits sponsoring PatientInform,
many publishers have decided to allow the groups to link without cost to
material that otherwise requires a paid subscription.
To get access to these studies, a consumer should first go to the sponsoring
nonprofit that’s related to a particular disease or medication.
For example, if you’re looking for the latest information on multiple myeloma,
go to ACS News Center of the
American Cancer Society’s site. Clicking the link regarding the disease reveals
summary of a report published in the New England Journal of Medicine, with a
link to the full article. The PatientInform logo on that page indicates that the
information is an outcome of the nonprofit groups’ efforts to make such
information available for free.
The Challenge Of Providing A Simple User Interface
As important as the groups’ goal may be, the PatientInform.org site
unfortunately doesn’t yet have a user interface that’s convenient for consumers
to use. Far from providing a simple search box for visitors, the site makes you
drill down just to find links to the three participating organizations where the
useful information is actually located.
Sampson says this is because the combined site is still a pilot program. He
promises that the site’s search functions will become easier in the future.
Even at this early stage, however, the PatientInform campaign is unearthing
information that was previously difficult or expensive for lay persons to find.
“A patient already has access to some of these [reports], but you’d have to be
very savvy,” Sampson says. For example, some medical studies can be found in
printed form in university libraries — but this is hardly as convenient as
looking them up on the Web.
PatientInform’s philosophy of converting fee-based information to free is one
that could apply to many other fields, not just health. It’s a model that
profit-making corporations as well as nonprofit organizations should look into.