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Leo Joerger and his grandchild.
Leo Joerger savors a moment with one of his grandchildren. Joerger's son Albert jumped on the web as soon as his father's cancer was diagnosed.

Ralph Hruban
The Pancreas Cancer Website that Ralph Hruban helped found received more than half a million hits in 18 months.

Medicine's New Main Street

By Randi Henderson

As patients take charge of their own health care, their first stop may no longer be their doctor’s office, but their computers.

n early 1998, Leo Joerger was diagnosed with cancer of the pancreas. Doctors in his hometown of Cleveland told him that the size and location of his tumor made it inoperable, and Joerger was inclined to accept the diagnosis. He had seen the best specialists at a leading medical institution. He thought he had done all he could.

But Joerger’s son Albert was not so willing to wait passively for his 64-year-old father to die of cancer. Albert Joerger is an environmental scientist who spends much of his work day at a computer terminal. He knows the communications possibilities of computing, and the ever-increasing world of information that is available for those who know how to navigate the many paths of the Internet and World Wide Web.

“When we heard my dad had cancer, we wanted to find as much information as we could,” says Albert Joerger, who lives in upstate New York. “You want immediate knowledge. I jumped on the Web to find out who was doing the best stuff with pancreatic cancer. We looked for all the information we could find and printed out reams of material.”

Joerger’s search of the Web quickly took him to Johns Hopkins’ pancreas cancer page (http://pathology. jhu.edu/pancreas). One of the most comprehensive and active sites devoted to this deadly disease, it includes background information about pancreatic cancer, continually updated reports about surgical and medical treatment and basic science research, and a “chat room”—an unmoderated discussion board where users post messages and reply to others, exchanging thoughts and experiences about pancreatic cancer.

The site also lists the names, phone numbers and e-mail addresses of surgeons who specialize in pancreatic cancer, and within days, Albert Joerger was on the phone to consult with Charles Yeo, M.D., one of several Hopkins surgeons mentioned. Yeo agreed to review Leo Joerger’s records and films, and by the end of that week, Joerger was on his surgery calendar.

Last Feb. 17, Yeo excised the cancer from Leo Joerger in a pancreaticoduodenectomy or Whipple procedure, a complex surgery for which Hopkins has established a track record with survival rates well above the national average. “It was a Whipple plus,” Joerger laughed a few weeks later, explaining that a piece of vein from his ankle was removed by a stand-by cardiovascular team to replace a blood vessel between the pancreas and liver that had been compromised by the malignancy. The bile duct channel also was reconstructed. But 10 months after the surgery, Joerger was fit enough to fly to Florida for a vacation with his wife, children and grandchildren to celebrate both the senior Joergers’ 41st wedding anniversary and Thanksgiving.

It's the Kids Who are Internet-savvy

The Hopkins Pancreas Cancer Web is one of scores of sites that provide information about Hopkins medicine to the world. These sites are loosely organized by a number of different departments or services and cross-referenced or “linked” to each other and to other relevant sites.

“The Joerger family represented a typical scenario,” says Yeo, one of many Hopkins physicians who now is seeing an increasing number of patients who found their way here via the Internet. “Many of the patients I see are of retirement age, and often they are not Internet-savvy,” he says. “But their children are. When the kids hear a cancer diagnosis and are told that there is no good treatment, they want more information.

“So they go online. They learn what they can by browsing. If they come across a home page that seems honest and reputable, then they send out some e-mail or make a few phone calls and see what the responses are.”

The mode of contact, Yeo and many other Hopkins physicians have found, is advantageous for both the patient and the institution. “These patients are usually better informed,” Yeo says. “They ask more relevant questions; they understand the terminology; they know what to expect. From their point of view, they have a greater chance of surviving the surgery by coming here, and often they are eligible for protocols that are not universally available.

Leo Joerger also has the satisfaction of knowing that his tumor could help others with the disease. Pancreatic cancer researchers will study it immunologically and genetically. “Perhaps 10 years from now we will have a better chance of curing these tumors,” Yeo says.

And no one doubts that 10 years from now, an even greater percentage of patients will be drawn to medical centers via the Internet as the amount of medical information on the World Wide Web grows exponentially and computer communications become an increasingly entrenched part of the lives of more and more people.

“This is the way it’s going to be done,” says urological surgeon Louis Kavoussi, M.D., whose pioneering uses of minimally invasive procedures for several major surgeries have led a good many patients to him via his department’s site.

Hopkins Medicine has been online in some form or other for more than 10 years. Today, information about treatment advances and the latest in clinical research here is accessible through several avenues to satisfy the needs of everyone from patients to doctors to laboratory scientists (see sidebars). The sites are administered independently, or through networks, and are intertwined online with links leading back and forth from one to another. They can be reached through their own home pages, or through keyword searches using any of the major Internet search engines.

Like the vast and sprawling Web itself, the sites have grown and multiplied like Topsy, with both the number and usage accelerating rapidly in recent years. The pancreas cancer site is a good example. Created in 1995 by Ralph Hruban, M.D., and Amanda Lietman, R.N., of the Department of Pathology, it serves a relatively limited population—only 27,000 Americans are diagnosed with pancreatic cancer each year, and most only live a few months after diagnosis. But the page has been accessed (“hit”) at least a million times since its inception. In 18 months, the chat room received 521,624 hits, with 15,000 messages posted.

In some ways, the decentralized strategy typifies not only the Web, but also this Institution’s own historic pattern. “Let every flower bloom—it’s a very Hopkins approach,” says Ron Sauder, director of the Office of Consumer Health Information, who manages Hopkins’ input into the commercial Web venture called InteliHealth. (Last month, judges from NetGuide 99 named InteliHealth the best health site for the year, based on content, design and personality.)

But the unregulated proliferation has led to some confusion, says J. Robert Sapp, M.A., director of advanced technologies and information systems and assistant director of the Welch Library. This has resulted in a current effort, led by Stephanie Reel, the recently named chief information officer for all of Johns Hopkins to develop a “single front door for all of Johns Hopkins Medicine.”

InfoNet was developed, Sapp explains, “as a road map, an index to Hopkins sites. As that evolved, we found ourselves acting as evangelists for the technology. What we decided to do was train users first, then create strategies that helped the users make the transition to developers.”

Today there are hundreds of Hopkins Web sites, ranging from comprehensive departmental overviews to small sites focused on a single project or grant. Teens with cystic fibrosis learn and support each other on one Hopkins site. Baseball great Cal Ripken and his wife, Kelly, who suffered from Graves’ disease, sponsored development of a Hopkins site sharing information about that and other thyroid problems. The Johns Hopkins Breast Center site is the source of education and referral information for hundreds of women concerned about breast disease.

And outside the Institution’s own sites, other Internet avenues also can lead to Hopkins. For Mark Hyatt, of Austin, Texas, an online news article triggered a chain of events that allowed an easier solution to his chronic kidney disease than he and his family thought possible.

Finding an Innovative Procedure

Hyatt, 41, has suffered with chronic kidney disease for 15 years. Last year, as his kidney function declined to 10 percent, his doctor told him he needed a transplant, and his family members were tissue-typed for compatibility.

Mark’s sister Holly Scaturo proved to be a suitable match, and the 40-year-old nurse and mother of four was willing to do what was necessary for her brother. But she was troubled about the risks she faced. “You do what you gotta do,” she says, “but I knew abdominal surgery would not be easy. I was not happy, and my husband was scared something would go wrong.”

Mark’s wife, Bonnie, also was concerned about the risk to Holly in donating a kidney, and decided to search for an alternative to the huge surgery. Bonnie, who works on software support for IBM, is very computer-literate and knows her way around the Web. She found her way to Hopkins through an article about laparoscopic nephrectomy, a minimally invasive surgery for retrieval of a kidney that allows for a much smaller incision and speedier recovery for patients than the standard major operation. The innovative procedure was developed at Hopkins about three years ago by surgeons Louis Kavoussi and Lloyd.

Holly was delighted at the prospect of only three weeks’ recovery time, compared to the six to eight weeks she would have faced with the traditional procedure. And Bonnie was thrilled by the prompt and efficient response she received from her first contact with Hopkins. “I called on a Monday morning,” she recalls, “and within 30 minutes I was talking to the transplant coordinator. By that afternoon, Mark and Holly were on the calendar.”

With the laparoscopic retrieval, Holly experienced eight to 10 times less pain than she would have with traditional abdominal surgery, says Kavoussi, who was Holly’s surgeon. “Other centers are now offering this procedure, but we’ve got more experience than any place else,” Kavoussi adds.

Bonnie Hyatt warns, however, of the potential pitfalls of researching medical treatments on the Internet. “It’s a double-edged sword because there’s so much garbage out there,” she notes. “You can get information, but don’t look at it as gospel. The Internet is a great place to get information, but not necessarily answers. The real key to good medical care is having a doctor you can trust and communicate with.”

User Beware

As medical information on the Net burgeons, most medical practitioners caution consumers to approach material with a skeptical eye. The imprimatur of a well-known medical institution gives credibility to the content, but even authenticated material is no substitute for professional consultation. While chat rooms, discussion forums and newsgroups can be sites for valuable information and support for patients, they also can be sources of biased viewpoints, unsubstantiated claims or misinformation.

Most Web users and developers agree that the wide open and unregulated nature of the Internet is part of its usefulness, facilitating rapid information dissemination, dialogue and communication. But some are looking for guidance through what can often seem like a maze. Efforts now are under way nationally to rate health information on the Internet, and a number of different rating instruments are being developed. Last year, however, in a JAMA issue devoted to medicine on the Net, a review of the rating tools (subtitled “Navigating to Knowledge or to Babel?”) concluded that most so far are incompletely developed, and “it is unclear whether they should exist in the first place, whether they measure what they claim to measure, or whether they lead to more good than harm.”

A JAMA editorial in the issue warned that the Web “has the potential to become the world’s largest vanity press,” and that even savvy users “can have trouble distinguishing the wheat from the chaff, the useful from the harmful.” It proposes four core standards that Internet users should keep in mind when retrieving information from the Net: authorship, attribution, disclosure of “ownership” or sponsors, and currency. A second article in October in the same journal analyzed the pattern of use analysis of Hopkins’ Pancreas Cancer Web site.

A Smaller World

What may be the most amazing feature of the Internet is how much smaller it has made the world. No one appreciates this more than Piya C., an anthropologist who teaches and studies in California, but travels frequently to her native India.

Piya was home in India last summer when her father suffered a sudden episode of vertigo and was diagnosed with a tentorial meningioma. “I completely panicked,” Piya says, remembering that she felt desperate to get her father to the United States for medical care. “I have very minimal search skills,” she says, but she got online, searched for information about “neurosurgery” and “brain tumor” and soon found her way to a Hopkins Web site.

From India, Piya sent e-mail to Hopkins and also to UCLA and the Mayo Clinic. “Within five hours of my e-mail, a data entry operator from Hopkins had returned my message and said, ‘Relax, we’re sending your message to the International Services Office.’ Within another few hours, Piya had heard from a representative, and wheels started turning.

Two weeks later, Mr. C. was operated on by neurosurgeon Henry Brem, M.D. Brem confirmed that the tumor was benign, and the recovery was rapid. For Piya, it was a combination of technical and human qualities that restored her peace of mind. “They had the mechanisms in place to deal with us, to make it easy,” she says. “People there had this utter calm, they are used to handling this level of crisis. There was a sense of compassion under their brilliant technical wizardry. There is a palpable compassion that we encountered every step of the way.

“It’s quite a remarkable story regarding e-mail and the Internet,” Piya concludes, summing up the views of the many patients who have made their way to the Hospital via the Net. “It was just an astonishing set of miracles.”