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A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care - Workshop Summary
thousands of people who can follow what we are doing,” via “tweets” she had simultaneously posted on Twitter. “The Internet is moving from being a stationary, slow, desktop-based information vending machine into what is now a fast, mobile, communications appliance,” Fox added.
This information technology is enabling many different ways for people not only to consume information about health and health care, but also to contribute information, Fox said. The Pew survey revealed that 52 percent of Internet users watch videos online, more than one-third share online photos, including X-rays and other medical graphics, and one out of five Internet users with cancer uses social network sites. “The Internet is really changing people’s expectations of what should be available to them, and there is a broad uptake for social media in health,” said Fox. “We are seeing that patients are looking for stories about people who are just ahead of them on the path, and they are learning from each other. Patients are doing the data collection that you crave, and they are ready to participate and be seen as your colleagues.”
Fox pointed out that between 2006 and 2008, Pew surveys found that the proportion of American adults who responded that they, or someone they knew, had been helped by medical advice they found online went from one-quarter to nearly one-half. Only 3 percent responded in the most recent survey that they had been harmed from medical advice they found online. Fox concluded by saying, “Researchers and clinicians can take advantage of what patients are already doing outside the system and welcome them into the system.”
An online leader in gathering and disseminating information about cancer to those affected and their caregivers is the international Association of Cancer Online Resources (ACOR), the largest online social network for cancer patients. Composed of close to 200 separate online support groups and social networks for individuals with cancer, ACOR has served more than a half-million cancer patients and caregivers and currently has 60,000 members. ACOR delivers an average of 1.5 million e-mails weekly to its members, including a tremendous amount of the latest scientific information about their disorder and clinical trials in which they can participate, reported Gilles Frydman, who founded ACOR in 1995. “ACOR is not a chat room,” he said, although it does provide members with the opportunity to share their personal stories with an emphasis on medically or quality-of-life significant events. One of the goals of the organization is patient empowerment and activation, and accelerating access to relevant