A researcher from the Pew Internet & American Life Project explored the potential for online communities to transform treatment and counseling for patients with chronic disease.
Patients with chronic illness are less likely than healthy individuals to have access to the Internet, according to a recent study by the Pew Internet & American Life Project. Those who do go online, however, are more likely to participate in social forums—such as blogs, patient communities, online discussions, listservs, and message boards—to learn more about their disease from others who have it.
Speaking about her findings at the Chronic Care and Prevention Congress in May, Susannah Fox, the report’s author, fielded an intriguing question from Allan Khoury, MD, PhD, chief medical officer of Walgreens’ Take Care Health Systems. Dr. Khoury asked whether pharmacists at Walgreens, a Pharmacy Times Strategic Alliance Partner, should train patients to use PatientsLikeMe, a social networking site that connects communities of patients with matching diagnoses.
Fox wrote about the encounter on her blog, describing what that training session might entail: “Imagine the scene: ‘Here’s your new prescription for your life-changing diagnosis, ma’am, and here’s someone who’s going to show you how to track your symptoms and make sure the treatment is working for you.’”
The potential benefit of social networking for patients with chronic illness is too great to be ignored, according to Fox. In her survey for the Pew project, she and coauthor Kristin Purcell found that patients living with chronic disease are “significantly more likely than other Internet users” to say that health information found online made a difference in their care.
“This survey finds that having a chronic disease increases the probability that an Internet user will share what they know and learn from their peers,” the authors wrote. For many participants, the benefit of participating in these exchanges was the sense of community they gained and the knowledge that others share their symptoms and experiences.
Certainly, online health information should not replace advice from pharmacists or other trusted health care professionals; however, guides to patient communities could be incorporated—along with basic health literacy training—into counseling sessions for patients with chronic disease. Along these lines, Fox believes the health care system should “take advantage of patients’ shared wisdom” to improve outcomes for chronic disease.
“If chronically ill patients can find ways to connect and learn from each other,” Fox asked attendees of the Chronic Care and Prevention Congress, “why can’t your organizations find ways to connect and learn from them?”
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