Are You Losing Your Voice?

Online patient support groups and other health 2.0 resources can be a valuable component of cancer treatment. Rather than being dismissive or suspicious of patients’ attempts to find information and support online, oncologists and their staff should offer guidance and encouragement, and view it as an opportunity to strengthen the physician—patient relationship.

Guiding a futuristic, humanlike character through a maze, players blast away at deadly enemies, always making sure that their energy levels are high, their defense shields are strong, and they have sufficient stores of ammunition.

It may sound like a classic shoot-’em-up videogame, until you learn that the player controls a humanoid “nanobot;” that the maze really is the human bloodstream; that the bad guys are cancer cells, bacteria, mouth sores, and neuronal impulses; and that the weapons include radiation guns, chemotherapy, and antibiotic rockets. No, Re-Mission is not your typical videogame. Instead, it is an educational tool aimed at adolescents and young adults with cancer.

Along with the game, developer HopeLab Foundation offers a “digital storytelling” section on its website, with videos from a 2007 meeting of young cancer survivors. The Re-Mission site features a community of players, that includes blogs, message boards, and a “What’s up, doc?” section, where cancer patients can pose questions such as, “Is it safe to play basketball at school next year if I have cancer?” Users can submit artwork and poetry as well. In this sense, the principles behind Re-Mission are similar to those of myriad interactive, health-related websites, where patients have been flocking for support and information about cancer and other serious conditions.

THE HEALTH2.0 CLUSTER EFFECT

A Manhattan Research study on direct-to-consumer pharmaceutical marketing, released in November 2008, found that as many as 145 million adults in the US had sought health information online in the previous 12 months, and that at least 90 million looked on the Internet for drug information. Of them, 60 million were visiting sites with“health2.0” technologies—interactive or user-generated content such as blogs, support groups, message forums, chat rooms, rating services, and audio/ video postings—more than double the number of people than a year earlier.

Meredith Abreu Ressi, Manhattan Research’s vice president of research, says there is a cluster effect around health2.0 applications for people with serious health issues. “The highest correlation is age,” Ressisays. “It really kicks in around age 25.” She sees very active communities for chronic obstructive pulmonary disease, depression, fibromyalgia, and emphysema. With cancer, however, age is less of a factor. “It’s the condition that drives them to online communities,” says Ressi, who adds that patients are particularly likely to seek out advice from the Internet when they are being asked to make difficult decisions.

The study found that cancer patients who looked for health information online were twice as likely to participate in condition specific online communities as the general population of online health consumers. Manhattan Research also says that more than one-fourth of cancer patients in its study could be defined as health2.0 consumers.

On December 5, as part of a series called “Second Opinion: Medicine Online,” the CBS Evening News aired a story about how social media are affecting medical treatment and research. The piece featured popular online community PatientsLikeMe, and talked about how its policy of making de-identified medical records available—with patient consent—for research purposes is helping to accelerate drug discovery for ALS.

PatientsLikeMe and similar sites truly are changing the paradigm in the physician—patient relationship. Following a redesign last summer, consumer health information site Wellsphere now incorporates blogs, multimedia content, and “community” pages for various health and wellness topics, including cancer. The site gets about 3 million unique visitors a month. “It’s an environment where people can get all the information they need on a health condition,” says Wellsphere’s chief information officer and chief medical information officer Geoff Rutledge, MD, PhD. “We view this as a combination of information and support.” Each community has designated “health mavens”—clinicians and patients alike—to lead discussions and answer questions. “Patients can be an enormous source of support,” according to Rutledge.

This is particularly true among those who see doctors as authoritarian. “Many patients won’t ask questions such as ‘What are the side effects?’ or ‘How much time do I have to live?’ because they fear they’ll be frozen in their tracks,” says Michael Nissenblatt, MD, associate director of medical oncology at Robert Wood Johnson University Hospital, New Brunswick, NJ. “If they can find the information on their own time, it is less likely to be threatening to them.” Nissenblatt says well-educated patients are more likely to mention to him information they have found online, in part because they tend to be less intimidated in front of doctors and are more willing to ask questions.

Though there is some danger with misinformation, Nissenblatt says the Internet often helps patients “integrate information into their lives in a more rational way.” This is particularly true when they have rare diseases. In many ways, the online information supplements what the doctor tells them, such as with knowing the side effects of various treatments. “Everybody knows about hair loss and vomiting from chemotherapy, but not everybody knows about infections,” Nissenblatt notes.

Robert S. Miller, MD, president of the Sacramento (CA) Center for Hematology and Medical Oncology and an American Society of Clinical Oncology board member, largely agrees that patients should do whatever they can to learn about and understand their conditions. “My practice certainly encourages it,” Miller says.

Miller tends to direct patients toward “more mainstream” sites, such as ASCO’s cancer.net (formerly Patients Living WithCancer) and the Association of Cancer Online Resources. Although he says the ACOR site is “old-school Web 1.0 stuff, it’s a very good resource in terms of tumor type.”

Nissenblatt, who practices at Central Jersey Oncology Center, tends to prefer condition-specific sites, including the Life Raft Group for the rare gastrointestinal stromal tumor (GIST), and various carcinoid support groups. Miller also mentions a few that are specific to certain types of cancer, including the Leukemia and Lymphoma Society and, for breast cancer, Susan G. Komen for the Cure. The latter has an ongoing partnership with ASCO.

Because cancer is such a serious ailment, oncologists naturally see online resources as supplements to, rather than replacements for, professional medical care. The Manhattan Research survey found that 40% of medical oncologists actually went online while consulting with patients to show them some of the available resources. “They’re more likely than other physicians to recommend an online support group,” Ressi says. “That said, oncologists aren’t swayed [by online information] in their decisions.”

Indeed, Nissenblatt views online support groups and consumer education sites in the same light as treatment guidelines: helpful, but by no means the last word. A computer might guide the doctor toward a prognosis or course of treatment; “however, it doesn’t tell me anything about the human being sitting in front of me,” he says. “There’s no computer that can be compassionate or understanding, or hold my hand, and that’s my job,” Nissenblatt adds. “It is vital to sit down and inform the patient and family of the diagnosis and treatment … in the context of that particular type of cancer.”

Anna Gottlieb, executive director of cancer support group Gilda’s Club Seattle, agrees that there is nothing like some good, old-fashioned face-to- face compassion. “There’s a big difference between getting educational information online and getting social and emotional support,” says Gottlieb, who started the Seattle chapter of the well-known cancer support group in 2002. For this reason, Gilda’s Club has remained a traditional support organization. However, she sees a benefit in the online world as a supplement to in-person meetings and as a way of reaching people in rural areas. “In a city like this, you have an option to do both,” Gottlieb says. “People in smaller towns might not.” And for younger people who essentially were weaned on computers, online support groups might offer an easier path to comfort. “It is hard for people who are diagnosed very young,” Gottlieb says. “They need as much support as they can get.”

DANGER, DANGER, DANGER

Although doctors certainly do make mistakes, it is important to know that some corners of the Internet are rife with bad or misleading information and hidden agendas. For one thing, Gottlieb says, “You don’t know who you’re talking to.” And often, information is unfiltered and unverified. Nissenblatt often reads consumer cancer sites. “The sites in which no products are being sold are probably more reliable,” he says. He has seen sites that hawk such dubious remedies as intravenous vitamin C, chelation therapy, and even horse urine, which was a widely accepted cancer remedy in the 1950s and ’60s.

Nissenblatt notes that herbals and other alternative medications are widely used for cancer treatment in Germany. “These things have very little value and many side effects and extreme costs,” he says. Three of his current patients regularly travel to Germany and hear about these options, but they have run the idea by him rather than tried the substances on their own. “If they try to navigate it on their own, they are likely to be misled.”

Exhibit A in online misinformation is Wikipedia, the popular online reference tool that relies on the general public to update and edit its millions of entries. Comedian Stephen Colbert coined the term “wikiality,” a combination of wikiand reality, to illustrate that a falsehood can be taken as fact simply if enough people believe something is true. Kevin Clauson, PharmD, associate professor of pharmacy practice at Nova Southeastern University in Palm Beach Gardens, FL, has studied the accuracy of drug information on Wikipedia. “The onus is on health professionals to recognize its limitations,” Clauson says.

Clauson led a study that appeared in the December issue of Annals of Pharmacotherapy, comparing Wikipedia to the free, online Medscape Drug Reference. The study checked the scope and accuracy of the two reference tools against FDA-approved package inserts from drug manufacturers. “Drug information in Wikipedia has a narrower scope, is less complete, and has more errors of omission than the comparator database,” the article concludes. However, the researchers say Wikipedia showed improvement over time as users fixed earlier shortcomings. “That’s one of the strengths of Wikipedia,” Clauson says: the ability to make quick updates.

Clauson tells doctors and other practitioners not to just dismiss any information patients bring in from Wikipedia or similar sources. “If you’re going to do that, offer them an alternative,” he advises. On this point, Rutledge agrees. “The unguided exploration of the Internet on medical topics is not nearly as effective as exploration in conjunction with a physician. The real value of the Internet is in conjunction with the doctor,” he says. “Not to diagnose … but to engage the doctor,” Rutledge explains. “It is overwhelming sometimes to go online,” says Gottlieb, and patients need all the help they can get. Physicians just might be uniquely suited to apply their compassionate healing skills to helping their patients navigate the world’s largest storehouse of knowledge and opinion, the Internet.

Neil Versel is a freelance writer and proprietor of Neil Versel’s Healthcare IT Blog.