By Anna Merlan
By Roy Edroso
By Carolyn Hughes
By Chuck Strouse
By Albert Samaha
By Anna Merlan
By Steve Weinstein
By Tessa Stuart
Lotus has designed a Web site, in English and Spanish, that is attractive yet simple enough to run on low-grade computers. Scientists and activists created a questionnaire with enough queries to get important scientific answers but not, they hope, too many to scare patients away. Confidentiality has been assured by Lotus's top-of-the-line encryption. And the questionnaire is smart: different answers track the user down appropriate paths. What about patients who don't know much about their treatment, not even the name of their drug? A picture of the pill is just a click away.
It sounds great, but everyone involved is nervous about the upcoming test. Will patients sign on? Will they trust the encryption security? Will they enter their data correctly--and consistently every three months? Can this high-tech experiment attract people who don't own computers and may never have used them--in short, the poor and marginalized who bear the brunt of the epidemic?
"The problem with a lot of my patients," says Jeannine Bookhardt-Murray, medical director of HIV services at Morris Heights Health Center in the Bronx, "is that they're hungry. Hungry! We're constantly on the phone calling the Food Force," a local agency that battles hunger.Before coming to Morris Heights last year, Bookhardt-Murray worked for 13 years at Harlem Hospital, but, she says, "I never saw poverty in Harlem like I do here." According to the last census, the median income in the clinic's zip code is less than $14,000 per household.
Here's Who Saved the World
Bookhardt-Murray's clinic sees about 300 HIV patients regularly, and another 100 off and on. (Only two died last year, a testament to the quality of care.) About half are Hispanic, a third are African American, and about 15 percent don't speak English fluently. How many have access to the Web? "Oh, very few, zero to 5 percent," says Bookhardt-Murray. "Most have probably never even used a computer."
While some of her patients are "very sophisticated" about AIDS and its treatments, poverty, Bookhardt-Murray says, often creates a mind-set of "feeling trapped, helpless, not knowing how to get what you need." That's why she's so excited that her clinic is one of the four test sites for TDP. She sees it as an opportunity not only for her to obtain scientific information, but also for her patients to learn more about their care.
Patients don't just input data. The program saves all the information they enter in a simple, clear, and confidential home page, links them to other high-quality Web sites, and allows them to communicate with other participants through a "chat" room. Planners also hope to create an automatic feedback system. For example, if patients are on a substandard regimen, the program might let them know. "A major goal of this whole thing is education," says Kaplan, TDP's principal investigator. "We want to help patients amass as much information as possible, so they can talk more rationally with their doctors."
Lotus is setting up three terminals at Morris Heights, and AAHP is funding a coach to help patients use the computers. The other New York test site is Dr. Howard Grossman's private practice in Chelsea, consisting mainly of middle-class gay men. The mix was designed not for political correctness, says McFarlane, but to get a representative sample. For example, poor people often have secondary diseases, such as diabetes and high blood pressure, which usually disqualify them from clinical trials but might very well affect their response to HIV drugs.
The first phase of testing is designed to see how user-friendly the system is and to find out whether patients can accurately and reliably enter their own medical data. But there are plenty of potential pitfalls.
"I have patients who really know their data, and others who don't keep a tab," says Wafaa El-Sadr, chief of Harlem Hospital's infectious disease division. While she thinks the database "would be really useful," she speculates that participants in the project are likely to be the ones who know their data, skewing the results. She thinks the project might also end up being biased toward the healthy, because "when people are sick, probably the last thing they want to do is enter data." And what about fraud, a drug company logging in fictitious patients doing well on their product?
Then there are the technical hurdles. The pharmaceutical giant Glaxo Wellcome has spent millions developing a similar database, called CHORUS, that tracks patients through medical records. "We underestimated what it would take to make the system work," says CHORUS coordinator Ebere Igboko. "We did not and could not anticipate bugs that had to be worked out and still are." The system automatically checks for errors--and finds them, even though participating doctors and nurses underwent "a lot of training." Igboko supports the Treatment Data Project: "It would be a really useful thing, but it sounds extremely ambitious."
TDP hasn't yet tackled how to analyze its data. The plan is for anyone to be able to log in and formulate any question, such as, "How are women in late-stage disease who have already taken medications A, B, and C faring on drug regimen X, and what side effects are they experiencing?" Making such a program easy enough for overworked doctors and nurses, not to mention patients, will be no easy feat.