Power to the People

Medically Reviewed by Charlotte Grayson Mathis, MD on September 01, 2003
8 min read

Online management tools put patients in control of their health.

If you're reading this article, you know that you can find and do just about anything on the Internet. Click here to order a pizza, buy a car, bid on antique furniture, pay bills, check your cholesterol levels, review your biopsy results, schedule your next appointment...

Whoa, back up there. Review your biopsy results? Check your cholesterol?

If you are a patient at Boston's Beth Israel Deaconess Medical Center and are enrolled in its free PatientSite, you can do exactly that. With a secure Internet connection and a few clicks of the mouse, you can examine your electronic medical record, schedule appointments, request prescription refills, ask your doctor non-urgent questions about your health, and find high-quality health-care information from doctor-approved web sites.

You can even find out who else has been looking at your records. And the best part is that you don't need a high CNP (computer nerd potential) to use the system.

About 14,000 patients and 150 doctors currently participate in the PatientSite program, says Daniel Z. Sands, MD, MPH, assistant professor of medicine at Harvard Medical School, and Clinical Systems Integration Architect at Beth Israel Deaconess Medical Center in Boston.

"Some patients don't give a hoot about it, and some patients find it very engaging and appreciate the fact that they can find out what's going on; they don't have to wait for their doctor to finally send them a message or call them to tell them that their test was normal or abnormal," Sands tells WebMD.

Not everyone is eager to take his or her health care online. Some patients and doctors see email and electronic medical records as barriers to personal contact rather than a boon to doctor-patient relations; others are concerned about privacy of medical information, Sands acknowledges. But he points out that many innovations that we now take for granted in medicine were initially rejected for many of the same reasons.

"A hundred years ago, doctors were worried about the telephone. They said, 'Geez, how can we practice medicine over the telephone. We can't examine patients, we can't look into their eyes and see what's really going inside their heads, we're going to make mistakes, how can we possibly provide this kind of care,' and there were doctors who didn't want to have a telephone in their practice.

"We think that's sort of quaint right now, but you can sort of understand the way they feel. As we move from the office visit to the telephone and then further to the electronic world, we lose information. We can't touch the patient anymore, we can't look in their eyes anymore, we're getting just the text."

Yet in a world of cost-cutting, 10-minute office visits, and "drive-through" labor and delivery, giving patients and physicians the tools they need to keep in touch helps to strengthen rather than strain the doctor-patient bond, Sands contends.

"By having this channel of communication, rather than creating an impersonal system we're really augmenting the relationship we have with our patients, cementing that in very important ways, because we have this other way to communicate without having to jump through hoops and have all these barriers. It's especially helpful nowadays when we have very little time to spend with our patients," he tells WebMD.

Putting medical records and patient information online (with access granted only with express permission by the patient) can also improve care when patients are referred to specialists or are seeing a physician for the first time, adds Stephen Schwaitzberg, MD, director of the Minimally Invasive Surgery Center and associate professor of surgery at Tufts-University School of Medicine in Boston.

"There's nothing worse than going to a doctor's office and he has no information about you. It becomes more personal when your physician is better informed," Schwaitzberg tells WebMD.

The online record could even be a lifesaver in some situations, Schwaitzberg notes. "If you were to travel from Boston to Los Angeles and fell down and knocked your head out, and at the same time you are allergic to penicillin, wouldn't it be great if your doctors in California knew that?"

It isn't just the big cities that are getting in on the e-medicine action, either. Winona, Minnesota (pop. 27,069) boasts only about 5% of the population of Boston, but in 2001 the citizens of Winona became part of an intriguing experiment.

The pilot program, dubbed Winona Health Online, invites patients to create their own health-related web pages, which can then be automatically updated with doctor-interpreted versions of laboratory and diagnostic test results. The personal pages also act as portals for drug-interaction checking, and allow patients to request prescription refills, schedule appointments, email their doctors, and link to information sources relevant to each patient's needs. Those without computers at home can use one of seven dedicated computer terminals sprinkled throughout the community for gaining access to the system.

Although about 3,000 people are eligible to use the free program, currently only about 500 are actively participating, estimates Michael Allen, vice president of finance and chief financial officer at Winona Health. That number is expected to grow, however, as more of the system comes online and additional components become available for more direct and efficient connections between patients and physicians, Allen tells WebMD.

"Of course we want patients to use it, but we also need to have doctors. It's got to be balanced, and I think as we have more and more physicians using it and it becomes a good tool for them -- not a new thing to learn and a change, but rather something positive for them and how they interact with their patients -- the system will become more and more important," Allen says.

Although some physicians in Winona reportedly are concerned that they'll be inundated with emails from patients, the Beth Israel-Deaconess experience suggests otherwise, according to Sands.

"For every 100 patients that you have registered on a system like this, it will generate about one message a day on average, so that's not a lot, and it takes very little time to answer these compared to phone messages, so it's not really a big time issue," he tells WebMD.

Tune in to the network news broadcasts on any given night and you're sure to catch a "cutting edge" report showcasing the latest gee-whiz medical technology, such as a camera that you swallow like a pill to take a 3-D movie of your intestinal tract, functional MRI that shows the brain at work in real-time, and robotic tools that do the grunt work in joint-replacement surgery.

But perhaps the biggest medical advance of the last decade has been the explosive growth of the Internet and the proliferation of health information sites. According to the Pew Internet & American Life Project, a survey that tracks Americans' use of the Internet and online health information sources, half of all American adults have searched for health information online, and about 80% of all adult Web surfers have searched for one or more health topics in cyberspace. In fact, browsing for health information is the third most common online activity, behind only email and research into products and services, Pew researchers say.

Given the staggering volume of the good, bad and ugly information out there, you'd think that health-care consumers would be overwhelmed, but that's not necessarily so, says a London-based health-care researcher.

"I think you need to distinguish between bits of e-health that simply allow health-care systems to do what they've always done, but perhaps do it slightly more efficiently, and then things which are generally transformative of health care, and I think that one of the things that's really transformative is the way that information has been democratized," says Elizabeth Murray, MRCGP, PhD, Department of Health Career Scientist in Primary Care at the Royal Free and University College Medical School at University College, London.

Murray tells WebMD that "the number of people who can now access health information on the Internet is much, much greater than the number of people who were previously able to go to a library or look up health information in some other source.

"Because information on the Internet is interactive, because it uses graphics, because it uses multimedia, and because it uses a lot of personal stories, it's very accessible information and so you don't need the high level of education that you tended to need in the past to access medical information."

In fact, Murray says, there is evidence to show that people with fewer years of formal education tend to benefit more from health information on the Internet than do people with advanced degrees and greater financial resources.

The evidence Murray refers to comes from the University of Wisconsin at Madison where researchers are developing the Comprehensive Health Enhancement Support System (CHESS). CHESS is a computer-based system designed to help individuals cope with a health crisis or medical concern by combining all of the resources they'd expect to find in many different places and putting it at the user's fingertips. The program even loans computers for up to a year to people who don't have them or can't get access easily.

CHESS, a not-for-profit, commercial-free project, is currently used by several major health organizations in the United States and Canada. According to its developers, the system can adapt to "various coping and information-seeking styles," and presents information in detail but in language that people with varying levels of education can understand.

In addition, the system is designed to be friendly to the widest possible range of users, says Fiona McTavish, lead developer of the breast cancer module, and deputy director of the CHESS Center's recent grant as Center of Excellence in Cancer Communications Research from the National Cancer Institute.

"The issue of access [to online health-care services] is a big one," McTavish tells WebMD. "One of the things we've done in the research and work on CHESS is to focus on the underserved. We just finished a study on the 'digital divide,' where we're looking at rural Wisconsin women who are underserved, which we define as people who are 250% or below the poverty level, and we're also targeting African-American women in metro Detroit, and we find is that the underserved are the people who benefit from e-health the most."

Originally Published: September 2003