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Patient-Physician Communication: An Emerging Partnership

The Wall Street Journal, New York, New York, USA

Correspondence: Laura Landro, The Wall Street Journal, 200 Liberty Street, New York, New York 10281. Telephone: 212-416-3295; Fax: 212-416-2653; e-mail: Laura.Landro{at}news.wsj.com

	The Opportunity for Partnership

Top The Opportunity for Partnership An Informed Patient Empowerment for Patients and... The Internet: An Information... The Communication Superhighway:...

 
It sounds like the oncologists' worst nightmare: patients swarming into your office, armed with reams of documents, studies, and medical data pulled off the Internet. Taking up your time with questions that are misinformed, misguided, or have nothing to do with the problem at hand. Shunning your advice and demanding to know whether you've read the latest paper on a new miracle drug made from bat guano.

It's easy to see why the burgeoning ranks of patients surfing through cyberspace might be disheartening to a cancer specialist with years of training and experience. But what I see at the medical information revolution is another thing altogether: the opportunity, at last, for cancer patients and their doctors to enter a true partnership. The era of the self-educated patient is upon us; now it is time for the medical community to embrace that idea and figure out how to help steer their patients to reliable sources of information that will help doctor and patient make informed decisions together as a team.

	An Informed Patient

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Seven years ago, when I was diagnosed with chronic myelogenous leukemia (CML), information wasn't so easy to come by. [Editor's note: See article beginning on page 64 of this issue.] The Internet was out there in the ether, but was primarily a tool for rocket scientists and computer geeks. I had the advantage of being trained as a journalist, so digging up facts and statistics came naturally to me. I was able to use the electronic news retrieval service of my newspaper, The Wall Street Journal, to find articles that had been written in the lay press about leukemia. My mother, Beverly Landro, a nurse trained in oncology, had access to medical libraries and personal relationships with oncologists.

But my real secret weapon was my friend, Marilyn Dammerman, who had a doctorate in biomedical science and was then doing research at Rockefeller University. As a scientist, she had access to Medline, the online database of the National Institutes of Health. She dug up information including the most recent studies on bone marrow transplantation and the various techniques used for the procedure, long-term survival statistics, and papers on recent developments in chemotherapy and radiation.

It was already clear that my only hope for a cure was a bone marrow transplant, and I was lucky to have two brothers who were identical sibling donors. But there were many more decisions to be made. By analyzing the papers Marilyn found in the medical library after reading abstracts from specialized journals like Blood and Seminars in Hematology, we were able to compare results at the various cancer treatment centers which performed bone marrow transplants. We discovered the debate over T-cell-depleted versus conventional transplants, and quizzed my doctors at Memorial Sloan-Kettering about the issue: why were the long-term survival statistics so much worse with T-cell-depleted transplants for CML patients? Why had other centers abandoned this procedure?

Challenging my doctors was no picnic. At one point, frustrated with the lack of responsiveness and cooperation I was getting from my doctor on the transplant team, I asked to be assigned to someone else. I encourage patients to do this; no one deserves to be treated with anything but respect and consideration by a doctor whom they are paying to treat them. The arrogance I encountered at Sloan-Kettering has long been part of its reputation. Recent media reports have suggested that the hospital is changing its ways to be more patient-friendly, in part because it faces far more competition from other growing cancer treatment centers in the New York market.

With some persistence, I did finally hook up with a much more accessible, caring doctor at Sloan-Kettering, but he couldn't make the picture look any better. I visited three other hospitals and talked to doctors at a half-dozen more to make sure that we were correctly interpreting what we had found in the medical literature. In the end, after carefully weighing all the evidence and opinions, I withdrew from treatment at Memorial and traveled 3,000 miles to the Fred Hutchinson Cancer Research Center in Seattle, Washington.

In 1996, four years after my successful transplant and free of the disease, I was asked by my editors to write an article about my experience for The Wall Street Journal. In doing research to update the medical aspects of the story, I soon discovered that Medline and a vast array of other resources that had previously been available only to professionals like Marilyn were now widely available on the Internet. Later, when Simon & Schuster asked me to turn the resulting Wall Street Journal article into a book, I relied on the Internet not only to find updated studies on the progress of transplantation biology, but also to link me directly to a huge cybercommunity of other patients who were using the Web to exchange both information and emotional support.

	Empowerment for Patients and Physicians

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In my book, "Survivor: Taking Control of Your Fight Against Cancer," I have tried to use my experience as a blueprint for other cancer patients as they enter what one of my colleagues refers to as the "netherworld of medicine." A patient doesn't have to be a journalist with a nurse for a mother and a friend in science. Today, anyone can do what I did, using not only the Internet but the growing resources of the many cancer nonprofit organizations, and patient advocacy and support groups. It is true that the parallel rise of managed care and restrictive health maintenance organizations over the last decade has made it difficult for many patients to choose their providers, as I did. And in the HMO culture, many doctors often seem too busy and frazzled to adequately focus on a patient's concerns. In this managed care environment it is more important than ever for a patient to manage his or her own care by being informed and up to date on all aspects of treatment.

While I wrote my book primarily for patients, its message is equally aimed at doctors. None of what I did would have been possible had I not encountered accessible, wonderful, caring doctors who were engaged and excited by the fact that one of their patients had done her homework and could cut to the chase about the issues and the decisions that had to be made. What was unfortunate is that along the way, I had some disheartening and depressing experiences dealing with cold, brusque and impersonal physicians and medical workers who were simply annoyed at a patient who was trying to be her own best advocate.

I believe we are at a crucial turning point in the doctor-patient relationship. It can never go back to the way it was, with patients relying blindly on the word of doctors as if they were infallible gods. At the same time, this mountain of information that is available to us as patients is overwhelming, and much of what is out there is useless, outdated, or just wrong. Without the cooperation and participation of the medical professional, all the information in the universe won't help a cancer patient.

Moreover, this democratization of knowledge about medicine and health could turn out to be the best thing that ever happened from a doctor's point of view. An informed patient is one who in the long run is likely to waste less time, is likely to understand what decisions have to be made, and is likely to modify behavior that puts her or his health at risk. Advances in science are so rapid that few clinicians can possibly keep up with everything; a patient who brings a new clinical trial or drug study or surgical procedure to your attention should be greeted with open arms.

	The Internet: An Information Revolution

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To get to the next stage, doctors have to embrace this information revolution. It is already happening: doctors are reading about the Internet and its pros and cons in their own medical journals, and many cancer treatment centers have put up their own websites that steer patients to useful information, carefully vetted by experts. As physicians, you need to take some time to surf the Web yourself, to see what's coming over the transom; take a little time to study what your patient is likely to encounter out there.

After my book was completed, I decided to write another article for The Wall Street Journal just to focus on stories of some of the remarkable cancer patients I met on the Internet. [Editor's note: See article beginning on page 59 of this issue.] Having done their own homework when confronted with cancer, they now devote much of their time and effort, gratis, to helping others do the same. Susan Stewart, a former leukemia patient, for example, started the Blood and Marrow Transplant Newsletter, wrote a handbook on transplant basics for patients, and provides such services as linking patients up with lawyers who can help them fight insurance companies that refuse to pay for a transplant.

The marvels of e-mail allow a lone patient to send a query out to a special mailing group of patients and caregivers going though exactly the same thing. I would advise oncologists curious about the information being exchanged by their very own patients to subscribe to a digest of any disease-specific e-mail discussion groups managed by ACOR, the Association of Cancer Online Resources. You don't have to even let them know you are there, but "lurk" and read the traffic of mail on any given day. I think you will be amazed at just how impressive and professional much of the advice is. BMT-Talk, started by Boston leukemia survivor Laurel Simmons, is a good place to start.

If your own hospital doesn't have a website, it probably soon will. Among the best already out there is The University of Pennsylvania's OncoLink, which links patients directly to detailed information and support resources for every conceivable kind of cancer. On Johns Hopkins University's website, a patient can directly e-mail an oncologist or surgeon after reading about the hospital's research in areas such as pancreatic cancer. Fred Hutchinson, M.D. Anderson and even Sloan-Kettering are all embracing the Web. Recently, a group of physicians writing in the Journal of the American Medical Association made the case for a social goal of universal access to health information and support and pointed to the Internet as the best chance for achieving that goal.

	The Communication Superhighway: High-Speed Medical Information for Physicians and Their Patients

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How? Even though personal computers are only in about 41% of U.S. homes, and a much smaller percentage have Internet access, those numbers are growing all the time as phone companies and cable systems offer Internet connections. Some 60% of public libraries now offer Internet access, and nearly all libraries will have it by next year. A recent survey by the New York research group FIND/SVP estimated that 80% of all consumers on the Internet are interested in tapping health care information, and close to 55% of adult users are specifically interested in getting information on diseases.

Of course, it isn't just about making sure patients have access to data—it's about changing the way doctors and patients interact with each other. Whatever its benefits in controlling health care costs, managed care's failings are giving the medical community a very bad rap just now. It has even permeated the popular culture: If you watch TV or go to the movies or the theater, you may notice that even in Hollywood, HMOs are the new bad guys.

"Wit" is this season's hit off-Broadway play about terminal cancer and chemotherapy; writing on the op-ed page of The New York Times recently about how she felt after watching the play, Dr. Abigail Zuger called it a "scathing indictment" of the medical world and the cold, inhuman treatment many patients experience in cancer treatment centers.

As for the patient depicted in "Wit,'' Dr. Zuger writes, her "illness may be her first problem, but her doctors and the hostile, humorless world they inhabit and pull her into are most certainly her problems, too." Saddened by that portrayal, Dr. Zuger notes that training programs are trying to improve doctors' bedside manner, and that courses in communication with patients, especially when there is bad news in the offing, are becoming standard parts of the curriculum in medical training.

That is certainly a start. Much of what is depicted in "Wit" is agonizingly familiar to those of us who have experienced it. I've been in a cancer ward where patients were left stacked up in hallways on stretchers outside the X-ray room. I've had needles jabbed in my arm by technicians who never looked me in the eye and who treated me like just another number. I've had my oncologist berate me for calling him on the phone with a question that I felt was urgent when he didn't think so. I've entered a hospital and felt instant despair with the perfunctory manner and impersonal care of the staff.

But I have also had the opposite experience. In Seattle, at Fred Hutchinson, for example, I've dealt with hospital workers who looked into my eyes with empathy and smiled. I met doctors who, harried as they were, found time to answer all of my questions and say it twice if it didn't sink in the first time. About five minutes after I sat down in a room with Dr. Rainer Storb at Fred Hutchinson in the spring of 1992, my gut told me it wasn't just the Hutch's survival statistics, it was the way they practiced medicine and interacted with patients that made it the place for me.

I don't call that special treatment. It is the kind of treatment everyone should expect when they walk into a hospital with a disease that is threatening their life. The clinical outpatient wards and patient admitting departments are your first line of defense; how patients are treated there can make a big difference between despair and hope. But the biggest hurdle of all is walking into that oncologist's office for the first time, facing up to the facts, and hoping the person we find there is going to reach out a hand and help us find our way in this treacherous new world. In my book, I tell patients, "It's your life, and it's up to you to save it."

But, Doctor, we can't do it without you.

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