Doctor mesothelioma research

In January 1998 Karen Parles, a 38 year old librarian at a major New York art museum, learned that she had lung cancer. "My doctors told me it was incurable, that I had only a few months to live," she recalls. "I'm a life-long non-smoker, so the whole thing came as quite a shock. I was pretty overwhelmed at first. But as soon as I could, I went on to the internet, looking for information. And I asked all my friends to help.

"I found a great support group for lung cancer, the Lung-Onc mailing list.[1] The other patients on the list answered my questions, suggested useful sites, and gave me a lot of invaluable support. But even so, I had a hard time finding the information I needed. There was great stuff out there, but it was scattered across dozens of different sites. There was no comprehensive site that provided links to all the best online information for this disease."

Through a friend of a friend, Karen heard that a surgical team at Boston's Massachusetts General Hospital was developing a new treatment for her type of cancer. "I went to Boston to see them and I was pretty impressed," she says. "But having a lung removed by an unproved procedure still seemed pretty frightening, so I shared my fears with my Lung-Onc friends. I heard right back from eight or ten others who'd had a pneumonectomy. They assured me that I could do it and encouraged me to give it a shot. I was the twelfth patient to undergo the new treatment. That was nearly a year and a half ago, and so far, knock on wood, I'm doing fine."

Like many other patients who have used online support groups,[2 3] Karen found the information she found there invaluable. "The group was a great source of advice for dealing with day to day problems during my recovery. Patients who've had chest surgery often have trouble sleeping because every possible position makes your ribs hurt. The folks on the list can tell you exactly what to do.

"After I recovered from the surgery, I got to thinking: I'm probably alive today because I'm wired and well-connected. That didn't seem fair. So I started a website, lungcanceronline.org, to share the resources I'd found with other lung cancer patients."

Karen's site offers access to in-depth information about lung cancer--listings of physicians who specialise in the various types of lung cancer, medical centres and clinical trials, links to bibliographic databases, medical libraries, conference proceedings, journals, and other medical references, as well as links for alternative medicine, online support groups, and survivors' stories. It offers access to Karen as well. "My Lung-Onc friends help me keep me up to date on the latest research and all the new treatments," she says. "And if visitors to my site are having trouble finding what they need, I'll help them find it--or I'll go find it for them. And whenever I learn something new, I put it up on the site."

AL-CASE, the Alliance for Lung Cancer Advocacy, Support, and Education (the only national US support organisation for lung cancer), now refers its members to Karen's site. Lungcanceronline.org is widely acknowledged as the definitive consumer site for lung cancer.

Why does Karen devote 20 or more unpaid hours a week to maintaining her site and helping other patients? "I suppose it's because it's so badly needed and no one else was doing it," she says. "But it's incredibly rewarding. I get these effusively grateful emails from people I've helped.

"This happens at the museum library too, of course. I'll find someone a fabulous 17th century book on German woodcuts, and they'll be grateful. But when people say, `If it wasn't for you, I'd be dead,' well, that's gratitude on a whole different level."

Patients as helpers

"The work Karen is doing and the site she has created are extremely important contributions to the field," says lung cancer specialist Roman Perez-Soler, associate director of clinical oncology at New York University's Kaplan Cancer Center. "When I first discovered Karen's site, I was so impressed that I called her up and went to see her.

"Karen represents a new type of patient we're now beginning to see. She has a sharp intelligence and a great intrinsic curiosity. She knows how to use the internet. And she appreciates both the patients' and the clinicians' points of view."

Patient-helpers like Karen don't compete with what doctors do at all, Perez-Soler says. "On the contrary, they can be wonderful allies for doctors. She finds the best, high quality online materials for lung cancer, classifies them by topic, and makes them easy for other lung cancer patients to find. It's a wonderful complement to what we do at our clinic."

But can patient-helpers like Karen really produce reliable online resources, even though they don't have a physician's clinical training? Perez-Soler believes they can. Clinicians must keep up to date on a wide variety of medical conditions while seeing dozens of patients a day. Patient-helpers like Karen will typically know only about their one disease, but since they can devote a great deal of time to it, their knowledge within that single narrow niche can be impressive.[4]

"Karen's site has become an important resource for all those concerned with lung cancer," Perez-Soler says. "She helps us all keep up to date on the best online links, the best medical centres, the best treatments, and the latest research. She can present complex clinical information in a remarkably user friendly way. And because she's a patient herself, she knows how to emphasise certain topics that clinicians may consider secondary but are very important to the patient--their quality of life, the impact of their disease on their friends and family, and the psychological aspects of their illness."

Patient-helpers like Karen can also help physicians market their services. "Karen has told me, `Please give me any materials on your clinical services you'd like other patients to see. I know how to edit it and where to put it so that the right patients will find it,'" Perez-Soler says. "We think she'll be a great help in our efforts to let other patients know about the services we offer. She knows that world so well."

Perez-Soler believes that his relationship with Karen may be a portent of things to come. "Karen and I exchange information on a regular basis," he says. "I send her information I think she can use and she does the same for me. I've made a few suggestions for things she might add to her site and she's always extremely grateful. I've learned a great deal from her site--and from Karen herself as well."

A new kind of patient

"We specialise in treating mesothelioma, and we recently put information about the treatments we offer up on our website. As a result, we now have patients coming in from all over the country," Perez-Soler says. "This is a new type of patient we haven't seen before. When they have a serious medical concern, they don't just accept whatever treatment their local doctor offers. They'll spend hours and hours on the internet learning about their condition, communicating with other patients and clinicians who share their interests, and tracking down every lead they can find on the best new treatments.

"If it's not the patient, it's the niece or cousin or the son or daughter. There's a health problem in the family and this young person goes online and they all begin learning about their family member's condition. They'll track down the ten most promising clinical trials, identify the treatment option they decide is best, and fly across the country to get it.

"When they come to see us, they already know a great deal about their disease, the treatments offered at other centres, and the latest research findings. And they have the intelligence to catch on to what you tell them very quickly. They often show me what these online networks of patients are saying about me, and about our clinic, on the internet."

Patients want online health information from their own doctors

A Harris poll in August 2000 concluded that 98 million adults have used the world wide web to find health information--up 81% from two years earlier.[5] During that time, the number of internet users who have never looked for health information online has declined from 29% of all users to 14%. Thirteen per cent of those surveyed said that they looked up health information for themselves and family members "often," 40% said that they did so "sometimes," and 33% had "very occasionally" looked up such data.

Women are more likely to seek health information on the internet than men. Those who visit health related sites are, on average, older than other users of the internet, and people over 65, who require the most medical care, are increasing their use of online services faster than any other age group. And nearly all online patients say that they'd like to be able to exchange email with their own doctors.