We have underestimated patients’ ability to provide useful online resources.

Several years ago, a visitor to my Web site posted the following question:10

Medical Web sites created by persons who are not physicians are unreliable and should, de facto, be considered medically unsound. Don't you agree?

After some consideration, I discussed the matter with White Paper Advisor John Grohol, psychologist, author, and Webmaster of the highly respected comprehensive mental health site for patients and professionals Psych Central (http://www.psychcentral.com). Grohol is also the author of the definitive book on the field. As it happened, John had recently selected a short list of the “best of the best” online resources in mental health from his extensive directory of mental health Web sites. His rating scale took into account four areas in each Web site: content, presentation, ease of use, and overall “experience.” The quality of the content was weighted more heavily than either

presentation or ease of use. We decided to address the question above by determining whether the developers of Grohol’s 16 “Top Sites” had been professionals or patients. Our conclusions: ten (62.5 percent) of the 16 top sites were produced by patients, five (31.25 percent) by professionals, and one (6.25 percent) by a group of artists and researchers at Xerox PARC.11

We observed that the patients who produce these sites certainly don't know everything a physician might know, but they don't need to. Good clinicians must have an in-depth working knowledge of the ills they see frequently and must know at least a little about hundreds of conditions they rarely or never see. Online self-helpers, on the other hand, will typically know only about their own disease, but some will have an impressive and up-to-date knowledge of the best sources, centers, treatments, research, and specialists for this condition. Smart, motivated, and experienced self-helpers with hemophilia, narcolepsy, hemochromatosis or any number of rare genetic conditions may well know more about current research and treatments for their disease than their own primary care practitioner. And when it comes to aspects of illness that some clinicians may consider secondary—e.g., practical coping tips and the psychological and social aspects of living with the condition
some experienced self-helpers can provide other patients with particularly helpful advice. The things clinicians know and the things self-helpers know can complement each other in some interesting and useful ways.

We concluded by quoting online patient-helper Samantha Scolamiero, founder of the BRAINTMR mailing list:12 “Group members—lay folk and professionals alike—have moved beyond the old, obsolete mindset that holds that only certain ‘qualified’ medical professionals may create and disseminate medical information. We lay folk are learning that we are qualified through our experience, our knowledge, and our concern. We now see that we are capable of contributions no professional can make and that by linking our efforts [with those of professionals] in a coordinated team, we can advance the well being of all.”

To better understand the power of online help provided by patients, consider the case of Karen Parles. Parles was a research librarian at a major New York art museum until January 1998, when she learned she had advanced lung cancer. “My doctors told me my cancer was incurable, that even with chemotherapy I had only a year or so to live,” she recalls. “I’d never smoked, I have two great kids, and I was only 38. So the whole thing came as quite a shock. I was pretty overwhelmed at first. But as soon as I could, I went onto the Internet, looking for information.13

“I’m pretty good at finding things online. But even so, I had a hard time locating all the information and people 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.

“I found a great support group, the ACOR LUNG-ONC mailing list

.

The patients on the list answered my questions, suggested useful sites, and gave me a lot of invaluable support. I can't overemphasize the importance of their help in those early weeks and months. It gave me instant access to the wisdom and experience of hundreds of other lung cancer patients.”

Then a friend told Karen about a surgical team developing a new treatment for her type of cancer at Boston’s Massachusetts General Hospital. “I went to Boston to see them and I was pretty impressed,” she says. “But having a lung removed by an unproven procedure still seemed 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.”

“After I recovered from the surgery, I got to thinking,” Karen recalls. “I’d found my life- saving treatment by a combination of Internet-smarts, luck, and personal contacts. Others might not be so lucky. So I decided to create an online resource just for lung cancer, a single, centralized site where patients could find links to everything they needed to help them get the best possible medical care, a place where they could learn to manage their disease in the best possible way.”

Parles launched her site Lung Cancer Online (http://www.lungcanceronline.org) in 1999. It lists and describes the best sites containing information about lung cancer. She encourages newly-diagnosed users to craft their own crash course in their disease. Visitors find guidelines and databases to help them find the top-rated lung cancer specialists and the best medical centers for each type of lung cancer. There is also practical advice with survivors’ stories, up-to-date information on the latest clinical trials, and guides to mining the medical literature. The site also refers visitors to a variety of online support groups.

In addition, visitors have had access to Karen herself. “Because I’m an experienced lung cancer survivor, I’ve found that many patients and family members want to interact with me personally, by phone or e-mail or in person,” she explains. “So in addition to keeping my site up-to-date, I spend many hours each week helping other patients, sharing my story, and providing hope and encouragement.” Many of the patients who have come to

rely on her counsel and Web site refer to Karen as their mentor, their role model, or their hero.

With characteristic modesty, Parles urged us to emphasize the important roles her support group, her extensive network of other lung cancer patients, and her network of expert medical advisors all play in maintaining and updating her site. “I work

collaboratively with the Webmasters and members of all the sites and groups I linkto. I depend on others for the questions I receive and the resources I hear about. So

lungcanceronline.org serves as a conduit for many voices.”