Who then can so softly bind up

the wound of another as he who

has felt that same wound himself?

-Thomas Jefferson

CHAPTER FOUR

[edit]   ^ The Surprisingly Complex World of e-Communities

In addition to searching the Web and e-mailing friends and family, many e-patients, especially the ones suffering from acute and chronic conditions, are using the Internet to communicate with other patients, family caregivers, and patient support groups they've found online. A participant in a Pew online focus group explained that after he was diagnosed with emphysema, his doctors told him there was nothing further they could do. They would make him as comfortable as possible, but he would die very soon. Unwilling to accept such a dire prediction, he searched online for further guidance and was welcomed by the members of an emphysema support group called Efforts. ^[1]Several group members went out of their way to help him get the information he needed to understand his disease and its treatments. They also encouraged him to become more involved in his care and to take a higher degree of control of his illness. He now spends eight hours a day online, learning everything he can about his condition, reviewing the latest studies and treatments, and offering support and guidance to other patients. ^[2]

[edit]   ^ Online Support Communities

A 2001 Pew Internet study on online communities (e-communities) ^[3] found that 28 percent of U.S. adult Internet users, about 34 million people, had used the Internet to connect with an online support group for a medical condition or a personal problem. The Internet now offers health e-communities for almost every imaginable medical challenge-from AIDS and breast cancer to depression and stress, from weight loss and smoking cessation to parenting issues and elder care. ^[4]

Every day, millions of e-patients from around the world communicate with each other via their health e-communities. A single cancer site, ACOR.org, sends out more than 1.5 million e-mails weekly via its health e-communities.

Health e-communities are a subset in a much larger universe of online groups that are devoted to topics ranging from politics and sports to news, city government, and religion. Eighty-four percent of all U.S. Internet users-about 90 million people-have participated in some type of e-community, and 66 percent (80 million) stay in regular touch with one. ^[5] As the facilitators of many such groups have learned, people often turn to e-communities during a time of crisis. In the aftermath of the September 11, 2001, attacks, a third of American Internet users read or posted material in online chat rooms, bulletin boards, or other online forums. ^[6] The explosion of social networking sites where people can share daily stories, pictures and friends is starting to generate new, specialized health-oriented web-based e-communities. It thus seems likely that as the Google generation ages, many more e-patients will turn to medical e-communities when faced with a medical crisis.

[edit]   ^ This is Crazy! This Information Needs to be Saved!

In 1995, Gilles Frydman's wife learned that she had breast cancer. "Our doctor looked at Monica's biopsy and said, 'You have nothing to worry about,'" Frydman recalls. "'Your wife has ductal carcinoma in situ, and we are going to take her breast and lymph nodes away. We will give her prophylactic chemotherapy. And just to make sure, we'll do a brain scan, a liver scan and a bone scan. But there's really no reason to be concerned. It's all quite routine.' Our entire conversation lasted about ten minutes." Frydman, who is delightfully and unmistakably French, gives a classic Gallic shrug and rolls his eyes at the ceiling.

"This lady was one of those doctors who gives the medical profession a bad reputation by trying to play God," he explains. "She took it for granted that she knew everything there was to know while we knew nothing. So she would give the orders and we would obey without question. There was no need to discuss alternatives."

Fortunately, Frydman knew his way around the Internet. "As soon as we got home, I went online, found a mailing list for breast cancer, and jumped right into the conversation: 'This is what our doctor recommends. Is this reasonable?' The answers to my questions came flooding back. After four hours, I knew that this was a complex type of cancer, for which an expert reading of the pathology was particularly important. Group members mentioned the two top pathology experts in the country. One of those experts just happened to be in New York where we reside." Frydman arranged to see a breast cancer specialist in his medical institution within a few days.

"The doctor at Sloan Kettering could not have been more different," Frydman says. "He showed us the test results and explained what they meant. He listened attentively to my wife's questions and worries about the potential impact of treatments on her quality of life. He reviewed our situation in great detail and confirmed what we'd learned from the e-community: The treatments our other doctor had recommended were seriously out of date. There was no need for chemotherapy and no reason whatsoever to do a radical mastectomy. The state-of-the-art treatment for Monica's cancer had been, for at least ten years, lumpectomy and radiation. Our new doctor said he was reasonably sure this was the only treatment she would ever need. And so far, that's turned out to be true."

During his wife's treatment, Frydman became an active participant in the BREAST-CANCER e-community. He was impressed by the quality and complexity of the information it provided and by the dedication of the list's organizers and core group of active members, but he was horrified to discover that once messages were sent out to subscribers, they weren't saved and archived.

"All this material, which had been so valuable for us, was simply disappearing," Frydman says. "Once it went out to the group, it was gone forever. I talked to the list owner and discovered that he was hosting the community on a university server. They hadn't the storage space or the manpower to create such an archive. So, I said to Monica, 'This is crazy. This information needs to be saved. I'm going to start a Web site to make that happen.'" ^[7]

Once he had the breast cancer list archive up and running, he began contacting the facilitators of other cancer support groups, offering to archive their list messages in searchable form. Within six months the original idea evolved into the establishment of a nonprofit organization, the Association of Cancer Online Resources (ACOR), and a Web site (http://www.acor.org).

Eleven years later, Monica Frydman is doing well, and the Web site her husband created has become the world's largest online community for cancer patients. The ACOR site currently hosts more than 150 cancer-related public e-communities; most of them support groups for specific types of cancer. A statement on the home page hints at the site's importance for cancer patients worldwide: "ACOR delivered 1,524,367 individual e-mails across the globe last week." Most of the ACOR e-communities have been in existence for a decade or more and keep on adding new members almost daily, demonstrating the benefits they provide to their members. In the early years, many health professionals considered those e-communities to be potentially dangerous, but recent peer-reviewed studies show how those self-organized groups enable their members to properly assess the quality of the information received and correct potentially harmful information in a matter of hours. ^[8]

[edit]   ^ Braintalk: An e-Patient-driven Online Educational and Support Community

The field of neurology rather than oncology provides another interesting example. In 1994, a team of Massachusetts General Hospital (MGH) researchers examined how people with neurological concerns were using the Internet. Even at that early stage of the Internet's evolution, they found that e-patients with epilepsy, multiple sclerosis, Parkinson's disease, and many other neurological concerns had already created an impressive variety of online health resources.

"We found their online support groups especially intriguing," said White Paper Advisor Dan Hoch, MD, a co-director of the project. "They offered their members more convenient, powerful, and complex information and support than any of the face-to-face groups we had seen."

"Those early online groups really impressed us," said White Paper Advisor John Lester, the project's other co-director. "But they were scattered across dozens of different servers. There was little communication or coordination among different groups. There were groups for some neurological concerns but none for others, and there was no easy way for patients interested in forming a new group to find one another." So in March 1995, Lester, Hoch, and their colleagues Stephanie Prady and Yolanda Finegan instituted a family of online groups called the BrainTalk Communities (http://brain.hastypastry.net/forums/) to support e-patients with neurological concerns. ^[9]

[edit]   ^ Building from the Bottom Up

Many professional efforts to develop resources for e-patients have taken the traditional "doctor knows best" approach, providing professionally-created content in a top-down manner. "In these provider-centered systems, patients and caregivers have little or no input or control," Lester says. "Yet the communities we'd observed-in which patients had complete control-appeared to be doing quite well without professional assistance."

"We decided that we would think of ourselves as architects and building contractors," Hoch recalls, "creating an online system in response to patient requests. Our ultimate goal was neither to direct nor monitor our e-patients' activities. We simply wanted to help them do whatever they wanted to do. So instead of specifying the topic areas and designing the underlying IT structure ourselves, we asked patients what they wanted and designed the system by following their suggestions."

The MGH team launched the project by establishing basic discussion groups for epilepsy (Hoch's specialty) and 34 other health topics, from Alzheimer's disease to Tourette's syndrome. The forums were open to the public and originally were not moderated by the developers. Users were coached in the use of the online systems-and were then encouraged to moderate the discussions and manage the site on their own. Today, the BrainTalk Communities host more than 300 support groups devoted to neurological diseases and disorders. "BrainTalk is a user-driven or 'bottom up' community space," Lester says. "Patients, not professionals, provide the content and make and administer the rules. They do a very impressive job of maintaining the communities and helping one another. And by outsourcing most of the management, content development, and day-to-day operations of the site to patients, we've been able to keep our expenses to a minimum ."

After nearly a decade of e-patient research, the MGH e-patient team has concluded that people's online behaviors are considerably more complex-and more social-than most health professionals realize. "A typical MS patient might say, 'Okay, first I'm going to check my e-mail-including my mailing list messages-and respond as needed,'" Lester explains. "'Then I'll go see if there are any new messages on my three favorite bulletin boards and maybe post a few comments. Then I'll check my favorite chat room to see who's there. Then I'll check my MS buddy list to see who's online right now and invite some friends to join me there. After that I'm having lunch with Matt, an MS-er from California. I know him well from the group, but I've never met him before face-to-face. And after lunch I need to go online to read the latest issues of the three main medical journals for MS so I can summarize the key articles for my support group.'"

[edit]   ^ Online Groups Supplement, but Don't Replace, Doctors

In one of the earliest studies of e-patients who were members of an online support community, developer Bill Kelly and I surveyed 191 active members of a family of online support communities, which have since become a part of WebMD. ^[10] Most of our respondents were seriously ill patients dealing with conditions like breast cancer, prostate cancer, ovarian cancer, and hepatitis C. We asked them to tell us which of the following three resources-their specialist physicians, their primary care physicians, or their online support groups-they would rate most highly in of the following categories:

Online groups ranked significantly higher than either generalists or specialists for convenience, cost-effectiveness, emotional support, compassion/empathy, help in dealing with death and dying, medical referrals, practical coping tips, in-depth information and "most likely to be there for me in the long run." By a narrow margin, online health communities were also rated as the best source of technical medical knowledge. Specialist physicians were rated highest for help in diagnosing a condition correctly and for help in managing a condition after diagnosis.

To say that these results surprised us would be an understatement. We were stunned, even dumbfounded. Clearly the value of these groups, as perceived by the patients, was substantially greater than most health professionals had realized. Yet it appeared that online groups had relatively little to offer in some areas (e.g., the process of diagnosis). Doctors' abilities to advise patients on an ongoing treatment plan were also highly valued, as were their technical knowledge and their capacity for support and empathy. In fact, it appeared that doctors were best at what the groups were worst at, and vice versa. We concluded that the combination of a good doctor and a good support group might offer e-patients the best of all possible worlds.

[edit]   ^ Forgotten Heroes

I'm thinking of a particular type of medical worker. See if you can guess.

Give up? Family caregivers of those with debilitating, chronic illnesses are the most numerous-and overlooked-health workers of all. There are 27 million in the U.S. alone. They outnumber all other types of health workers combined by a factor of four to one, yet they often feel like the odd person out when dealing with hospitals and medical professionals. In the world of Health e-Communities, they are first-class, not second-class, citizens and frequently serve as the group's mainstays, organizers, and hosts. As Karen Parles notes, "Traditional healthcare all too often leaves friends and families out of illness care. But spouses and other caregivers have so much to offer. Online support communities don't make this mistake. We recognize family caregivers as full-fledged senior partners and give them the opportunity to draw on their full range of abilities for the common good."

[edit]   ^ Evidence of the Effectiveness of Online Groups

A number of studies ^[12] have described how online support groups operate, how they can be of use, and who can benefit from them. But most have been published in the social sciences literature and are rarely read by clinicians or cited in mainstream medical journals. Some of the medical researchers who have attempted to evaluate these groups have projected their professionally-centered perspectives into the evaluation even though they may not apply, co-opting lay self-help models and developing professionally led therapy groups instead. Professionally-run groups and patient-run groups exhibit very different dynamics: Professional groups may discourage patient initiative and assertiveness and run the risk of becoming little more than shared "ask the doctor" sessions. Patient-initiated groups that have emerged out of patients' own efforts can be considerably more effective at stimulating patient initiative, empowerment, and autonomy.

The studies done to date, even those considered breakthrough research, ^[13] have only started to scratch the surface. Much of the most fundamental research in this area remains to be done. No one knows how many health e-communities exist. There are not even any good ballpark estimates. No one knows what might happen if top medical specialists for a specific condition and a robust and active patient-developed online support group for the same condition were encouraged to collaborate in innovative ways.

To help medical professionals gain a better understanding of the benefits online communities can provide, we asked the Advisors to identify some of the most important benefits of online support groups. Here's what they came up with.

[edit]   ^ Putting a Human Face on Medical Information

Online groups, and the materials they provide, often do a better job than medical professionals of providing patients with the information they really want and need. Learning you have a new disease can be an earth-shattering experience. One day you're "normal" and the next you're a "patient," perhaps for life. Connecting via an online support group with dozens or hundreds of others who have the same condition can be immensely comforting to newly-diagnosed patients. In many cases, such patients have never encountered anyone else with their condition.

Sharing concerns can go a long way toward demystifying and (as one e-patient wrote) "de-awfulizing" your condition. It can help you reframe the experience, from a unique catastrophe affecting you alone to a widely shared experience with which many others are currently living and coping-and many quite nicely. In the outside world, your diagnosis can sometimes seem a frightening misfortune that sets you apart from others. In your online community, it is a badge of honor that connects everyone together.

[edit]   ^ Practical Day-to-Day Illness Management Advice

Where online communities perform best is in providing members with answers to their practical day-to-day questions. As Karen Parles explained, "With the nonsmokers in the group, I discussed issues related to having a smoker's disease and what it's like to feel invisible within a stigmatized group. I found young mothers with whom I could share that particular heartache of raising small children while fighting a deadly disease. Group members advised me on a hundred matters, from where to buy a wig after chemotherapy to what type of pillow to use after surgery. And several fellow-patients offered useful advice on how to handle the medical paperwork and insurance issues that are a major source of stress for every cancer patient. This sharing of practical or 'non-clinical' information is typically seen by both patients and physicians as outside the physician's purview. This comprehensive support for the ongoing day-to-day challenges patients face is something no professional could possibly provide."

[edit]   ^ e-Groups Are Always There

Many patients can no longer count on seeing the same doctor when they need medical care. Physicians come and go. People switch jobs or lose them altogether. Employers drop or switch their healthcare coverage. Even those who are able to go back to the same facility can't always see the same clinician. It can be comforting indeed for a patient with a serious illness to know that they have 24/7 access to a concerned group of knowledgeable long-term friends who will come to their aid if needed. Online groups that preserve earlier postings as searchable archives can multiply their effectiveness by making the wisdom of their members available to many others, far into the future. Newcomers can search these archives intensively after a new diagnosis, finding much useful information and equipping themselves with an in-depth introduction to the group and its members.

[edit]   ^ Providing Continuing Support for the Incurable

Professional medicine is often at its worst in providing continuing comfort and care for patients facing serious illnesses that are beyond the hope of cure. In such cases, the support and care provided by patient-centered e-communities provide can be a lifeline. ^[14] Years of conversations taking place in some of these specialized end-of-life e-communities show their great effectiveness by providing supportive environments where patients learn to deal with the many fears usually associated with death.

[edit]   ^ Special Benefits for Those with Rare Conditions

"There's no medical condition too rare to benefit from an online support group," Gilles Frydman says. "The rarer the disease, the more valuable and cohesive such groups tend to be. Patients with rare cancers are often the first example of this disease their local oncologist has ever seen. So, most doctors aren't up-to-date on the latest treatments. e-Patients can learn about the treatments currently in use at the leading treatment centers from their online communities. And they can then pass this information on to their physicians."

Online groups currently improve the quality of patient care across a wide range of diverse geographic, economic, political, and cultural circumstances. As Karen Parles notes, "Some of the most active members of our Lung-Onc list come from rural areas with limited access to professional care. Two of our Australian members have a rare form of lung cancer their doctors had never seen and knew little about. Their physicians were very grateful for the treatment information the list supplied. There's so much we can do to help doctors and patients in foreign countries get up-to-speed on the latest treatments available in the US."

[edit]   ^ A Godsend for Those with Limited Access to Professional Care

As a member of the Brain Talk Communities (http://www.braintalk.org) recently observed, "When I talk to my doctor, I hear myself asking questions that my online 'family' needs to know. It's as if all these other people-the members of my group-are asking questions through me. And whatever answers I hear from my doctor, I know I'll share with them online." ^[15]

Gilles Frydman concurs. "Some uninsured and offshore members of our lists have told me that their online support group is their only source of medical guidance. Many English members of the breast cancer groups learned about Herceptin years before the anti-cancer agent was approved in the UK. A number of foreign patients suffering from gastrointestinal stromal tumor (GIST) learned about an early-stage European clinical trial long before the trial was listed in the NCI's PDQ database. Such help is increasingly available to the unwired." Karen Parles agrees, "A number of my fellow-members at the Lung-Onc group don't own computers themselves. They link to the Internet via their public libraries."

[edit]   ^ Keeping Up on the State of the Art for Your Condition

"Health e-communities can provide a comprehensive picture of the range of treatments currently recommended at treatment centers across the country and around the world," Frydman explains. "One of the main benefits for members is the ability to learn about the 'state-of-the-art' treatments available at the top treatment centers. We find that, in many cases, local clinicians have not mentioned these treatment options to their newly diagnosed patients. One would think this would be malpractice, but actually it is quite common.

"When patients in our groups discover that the treatments offered at the top centers are identical to those that have been recommended by their local clinicians, they are always greatly reassured," Frydman says. "When patients find evidence suggesting that they've been receiving sub-optimal care, they will usually share it with their clinicians. In many cases, they are able to convince their doctors to upgrade their services. But if the doctor is unable or unwilling to do so, they will frequently decide to exercise their right of free choice and will go to one of the top specialists or treatment centers that specialize in their type of cancer. When speaking of rare cancers, there are frequently just a handful of real specialists. These top experts often tell me that e-patients are now coming from across the country and around the world to consult them, with a constantly growing percentage of patients visiting the specialists following an Internet-based self-referral. The experts greatly appreciate the high level of knowledge among our members, for they much prefer to work with well-informed, highly-motivated e-patients who can proactively share the burden of medical decision-making." n