Struggle Over Online Cancer Service Spurs Larger Medical Ethics Debate

PUSHED ASIDE: E. Loren Buhle was a cofounder of OncoLink, but later battled with Penn administrators over its content. University's move to rein in a junior professor raises questions about responsibility for patient-care advice and the appropriate role of experts on the Internet. A recent struggle for control of a popular Internet cancer-information service at the University of Pennsylvania represents more than just an M.D.-vs.-Ph.D. rivalry in an academic department, according to physicians, researchers, social scientists, and cancer patients and their families. The incident also brings to light vexing ethical issues that promise to become more prominent as the flow of medical information on the Internet increases, they contend. These larger questions have arisen in the dispute over OncoLink, which posts research and clinical oncology literature, as well as a wide range of patient-support information. Concerns include what responsibility providers have for information they disseminate and what the appropriate role is for experts online and, indeed, who qualifies as an expert? For better or worse, physicians' control over the information reaching patients, and the public generally, may be ebbing, according to some observers. "All of these types of information are moving out of the hands of the medical priesthood and into the hands of the consumers," says Neal M. Goldsmith, a social psychologist who heads Tribeca Research Inc. in New York. Goldsmith studies the impact of advanced technology on society for government and corporate clients. "There won't be a monopoly on knowledge anymore. It's an interesting phenomenon, the democratization of expertise." Launched in March last year, OncoLink (http://cancer.med.upenn.edu) was the brainchild of E. Loren Buhle, a computer-savvy assistant professor of medical physics in the department of radiation oncology at the University of Pennsylvania School of Medicine, and pediatric radiation oncologist Joel W. Goldwein, an associate professor in the department. Later, another associate professor, gynecological oncologist Ivor Benjamin, joined Buhle and Goldwein. The three were coeditors of OncoLink, although Buhle the only nonphysician of the group controlled computer access to the service. Under Buhle's stewardship, OncoLink included information from the National Cancer Institute at the National Institutes of Health, but also materials from NIH's Office of Alternative Medicine, newspapers, and patients and their families. Buhle even wrote nontechnical articles himself, on topics such as pain management in cancer and surgical treatment of cancer. During the summer of 1994, OncoLink grew dramatically_at its height, the service averaged 10,000 electronic "hits" a day from as many as 92 countries. Buhle and his coeditors sought help from the medical school in identifying materials for posting. Department chairman W. Gillies McKenna responded by enlisting the members of the executive committee of Penn's Cancer Center as an editorial review board for OncoLink. By fall, however, Goldwein and Benjamin began to complain to McKenna that Buhle was ignoring their requests to add or remove material from OncoLink. Tensions escalated between Buhle and his colleagues, and, in December, McKenna wrested control of the OncoLink computer from Buhle. "I was ordered to give control of Onco-Link to [Goldwein and Benjamin]," Buhle recounts. "When I refused, since all the documents had to go past me, anyway, I was relieved of my computing [responsibility], in terms of running the computers. I was told that materials had appeared on OncoLink that were medically irresponsible." According to McKenna, Buhle "wanted to have the imprimatur of the University of Pennsylvania Cancer Center, but didn't want to take any of the things that go along with that. It gave him this tremendous platform of prestige, to have this thing coming out of a major university cancer center. But we felt that there was a quid pro quo we had to be involved at some level. We almost felt that we were being exploited." Buhle disputes the charge that posting information on OncoLink that had not been approved by Penn physicians was irresponsible. Valuable medical data can come from many sources outside the peer-reviewed clinic, according to Buhle, whose interest in cancer dates from his daughter Amanda's diagnosis with acute lymphoblastic leukemia in November 1989. Amanda is now nine, and her cancer has been in remission for about 21/2 years. OPPOSING VIEWS: Oncologist Larry M. Weisenthal, above, says the Internet offers the chance for "interactive peer review" that's "open to anybody who wants to participate." "Why have I devoted 30 years of my life to studying cancer, if that then becomes worthless?" asks W. Gillies McKenna, a Penn department chairman. Most patients and some physicians agree with Buhle about the usefulness of a broad selection of information, if the E-mail traffic on several cancer bulletin boards following the December coup at Penn is any measure. Peer review serves to perpetuate the status quo, they say, in an area in which medical experts have failed to provide adequate solutions. "The promise of cyberspace communications_the promise of something like OncoLink is that for the first time you've got the chance for less-filtered information to get out there," says Larry M. Weisenthal, medical director of the Weisenthal Cancer Group, Huntington Beach, Calif. He is also a member of the editorial advisory board of the Journal of the National Cancer Institute and a frequent contributor to CompuServe's Cancer Forum. "If it's a crackpot idea [being proposed online], my observation is that you'll have a million people 'flaming' the person who put up the crackpot idea, and if it's an unimportant idea, it'll get ignored in information clutter. But if it's an important idea, it'll get attention. It's [a process of] interactive peer review, and it's peer review that's not closed to a couple of anonymous reviewers, but is open to anybody who wants to participate. It's got the potential to revolutionize medical communication and dissemination of thought." Many physicians, however, agree with Penn that medical professionals have a responsibility to control the information they broadcast. They point out that medical information can have an overwhelming impact on patients without professional help in interpreting it. "In some ways, it would be a disservice even to put the peer- reviewed information out there, widely accessible," maintains Stephen Erban, an assistant professor of general medicine at the University of Massachusetts Medical Center, Worcester, who specializes in cancer screening. Moreover, notes Erban, even such prominent organizations as NCI and the American Cancer Society disagree on important screening issues. "In the last four years, there were approximately 14,000 citations on screening for breast cancer. I'm a provider who's had additional training in public health and epidemiology, and I can't handle a literature mass like that. How are you expecting the average patient to interpret it? The undigested literature is often very harmful." This view conforms to the approach taken by the editors of NCI's online cancer information service, called PDQ (gopher://go-pher.nih.gov:70/11/clin/cancernet/pdqinfo). Information about cancer treatment on PDQ is reviewed by one of five editorial boards to present the "state of the art," according to Kate Nagy, a technology transfer fellow at NCI's International Cancer Information Center, which produces the service. "The treatment statements come in two versions," Nagy reports. "The physician statement is fully referenced, very detailed, and very technical. It also gives survival statistics, which some practitioners don't want their patients to see. Then there's a patient version, written at a much less technical level. There's some argument about what level the patient information should be written at some people say what's in there is an insult to the intelligence of any reasonable person." "I'm sensitive to the notion that you want to disseminate knowledge as widely as possible, but people have to realize that not all knowledge is of equivalent value," McKenna asserts. "Why have I devoted 30 years of my life to studying cancer, if that becomes worthless? I see it as a responsibility issue we have certain responsibilities to the people who come to usp." "The wrong approach is to say that it's not our problem to determine whether this information is good and accurate or not, that it's [the responsibility of] the person who's reading it," says Goldwein. "From a physician's point of view and from an academician's point of view, that's not a responsible point of view. We prefer to take the high road and assure to the best of our ability that the information that we're providing is as accurate as we can make it. "The information that's being disseminated over this source is not going out to maybe 5,000 or 10,000 physicians, it's going out to up to 30 million people who may not understand the implications of what they're reading. And when they see that it's being disseminated by a resource that's supported and sponsored by a major university involved in cancer research, it lends a certain credibility to that particular information. So, I think that we need to be responsible about how we are disseminating that information." CONSIDERING THE SOURCE: Alternative therapies and folk medicine should never be given the weight of a paper published in the Journal of the American Medical Association, says R. Grant Steen. "Patients are likely to be quite unsophisticated about science," says R. Grant Steen, Ph.D., an assistant member in the department of diagnostic imaging at St. Jude Children's Research Hospital, Memphis, Tenn. "So, something that they see on a database [like OncoLink], even if it's labeled as tentative, prepublication, or even outright rumor, is likely to be given more weight than it should be given. And there's no way in the world that [alternative therapies], which may or may not be true, should be given anywhere near the weight as a paper that went through peer review and was published in the Journal of the American Medical Association." Steen, author of A Conspiracy of Cells (New York, Plenum Press, 1993), a book that aims to explain recent cancer research to patients and their families, argues that an educated, fighting patient has a better prognosis for recovery. Even so, he says, "the patient has to be armed with the right weapons. If you're trying to confront your physician and ask them why they want to do such-and-such a thing, the place to be coming from is not that apricot pits are an equally good treatment for this disease, because they aren't. The place to be coming from is making an informed decision, say, between radiation and chemotherapy. There are some things in folk medicine and alternative therapies that may work. But they haven't been proven to work." "The issue of how you do quality control on material posted on the Internet is a critical issue," McKenna emphasizes. "There is certainly a culture on the Internet that's opposed to any kind of quality control, because they think that it's censorship. We're just going to have to agree to disagree about that." For patients and their families, arguments about appropriate control over medical information are of less importance than their need for answers. Many who used OncoLink and say they found helpful information on the service are critical of Penn's actions. "It is never appropriate to control information," says Dean Mouscher, an options trader in Chicago who turned to Internet cancer-information sources when his father developed an aggressive form of brain cancer called glioblastoma multiforme in 1992 and was given little hope for survival. Through CompuServe, Mouscher located an independent clinic in Houston, run by an M.D.-Ph.D. named Stanislaw Burzynski, that offered antineoplaston therapy, a highly experimental and controversial protocol that Mouscher feels extended and improved the quality of his father's life. Mouscher's father died in 1993. In cases like his father's, especially, when establishment medicine can offer few answers, Mouscher contends that "people have the right to make their own treatment decisions based on all the information, even if that decision is a stupid one. But, in fact, people are not stupid. For example, you don't see people turning away from proven treatment when they're diagnosed with gonorrhea. They go to their local doctor and get a shot of penicillin. Why? Because penicillin works, and everybody knows it." David E. Scheim is chief of the systems branch at the National Eye Institute, a position with no medically related duties. When his wife, Abbie Ziffren, developed ovarian cancer in 1991, which later metastasized to her brain, he turned to OncoLink and other electronic cancer-information forums for help. Most valuable to him, he says, was the pooled expertise of many other cancer patients and family members. Through these channels, he was able to identify a novel, but approved, treatment called stereotactic radiosurgery not known to his wife's physician at that time that helped improve her condition. "You come into this assuming that, if there's anything good out there, your oncologist is going to know about it," Scheim observes. "But the exchange of information among sophisticated patient advocates often goes way beyond even what any single expert oncologist knows." McKenna insists that, for cancer patients, misleading information can be dangerous and may mean the difference between life and death. He recalls the case of a patient who chose to go to Mexico for a treatment unapproved in the United States that proved ineffective. By the time the patient reached Penn's medical facilities, his cancer was too advanced to respond to conventional treatments. "I hear what people are saying, that cancer patients need different levels of information," McKenna says. "But patients with cancer typically only get one chance to make the right decision. To my mind, it's important that, somehow, they distinguish between good and bad information at that time." "What's kind of bizarre is that no other physician or medical person anywhere in the rest of world found anything [on OncoLink] medically dangerous," Buhle counters. The department's taking control of OncoLink, he says, was simply a "power move" by the physicians and an unnecessary one: "Look at it this way I have a Ph.D.; I do not have an M.D. How far am I going to go in a clinical department? Nowhere. "Even within the medical community, five physicians will have five different opinions, and they all have valid points. My view is, let's put all five of them up there, so that the patient can understand what's involved. If they're working with their physician, they can work with them as an equal partner." Buhle is now on a terminal appointment at Penn and hopes to land a new position by June, when he will be out of work. Wherever he goes, he says, he would like to continue to develop his vision of an Internet-based medical-information resource. "I would like to do this for all of medicine," Buhle declares. "I've been asked, could I do this for arthritis? Could I do this for multiple sclerosis? Could I do this for heart disease? And I think if I don't do it, someone will, and I'd like to play a part in that. I'd like to advance our knowledge in medicine and information and communication. It's time for the next step." At least one concrete offer has been made by the president and chief executive officer of a San Francisco Bay-area software company, who is also a prostate cancer patient. The computer executive, who requests anonymity, says he has been in touch with Buhle to offer computer resources and facilities for a continuing Internet cancer-information project. "OncoLink was a breath of fresh air," the executive maintains. "It was an invaluable aid to me in choosing my treatment and in evaluating what I was told by my urologist and my general practitioner. Unfortunately, however, ever since Loren Buhle was discharged, OncoLink has been marginally maintained and is rapidly becoming useless, at least to me. Articles and citations that used to be posted weekly were last updated in mid-December!"

Struggle Over Online Cancer Service Spurs Larger Medical Ethics Debate

Apr 2, 1995

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