Are You Losing Your Voice?

By Neil Versel
Published: Monday, Jan 26, 2009
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.


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Online CME Activities
TitleExpiration DateCME Credits
Community Practice Connections™: 18th Annual International Lung Cancer Congress®Oct 31, 20181.5
Clinical Interchange™: Translating Research to Inform Changing Paradigms: Assessment of Emerging Immuno-Oncology Strategies and Combinations across Lung, Head and Neck, and Bladder CancersOct 31, 20182.0
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