For people with rare diseases such as amyotrophic lateral sclerosis, it may not be easy to find someone who knows exactly what they are going through. Online forums help with community building and also provide people with medical advice they find helpful, according to a survey conducted by PatientsLikeMe.com. In a study published June 14 in the online Journal of Medical Internet Research, the PatientsLikeMe research and development team reports that its users found benefits including enhanced understanding of their symptoms and side effects of medication. Paul Wicks led the research group at the PatientsLikeMe office in Cambridge, Massachusetts.
PatientsLikeMe covers a variety of conditions, including ALS, Parkinson disease, and multiple sclerosis. It is part social networking site, part hard-data collection service. Regarding networking, it works like many other social sites, Wicks said, but instead of connecting Van Halen lovers or ski fanatics, it links people who have, say, the same strain of HIV.
PatientsLikeMe invites users to record information about their conditions, such as symptoms, medications and dosages, and side effects. Then, the website aggregates those data into charts and graphs that summarize, for example, how many people are taking a certain drug and how many found it helpful. “We are trying to make it a data-driven discussion,” Wicks said. In doing so, the site aims to fill in the informational gaps between 15-minute doctor’s visits spaced months apart, and also to equip patients to work with their doctors in making medical decisions. PatientsLikeMe has received comments on user benefit over the years, and undertook this study to quantify what people get out of the site.
The researchers invited 6,825 PatientsLikeMe users to complete an online questionnaire, which 1,323 did. Among their key results, the majority of users found the site helpful in learning about symptoms and side effects. Seventy-two percent reported they gained insight on a symptom, and 57 percent said they learned about side effects. For example, Wicks said, users trade tips on how to manage side effects. Many multiple sclerosis users advise each other to use ice or a heat pack to reduce swelling and pain at injection sites.
In addition, the researchers compared the survey results with their own records of how often people log on and use the site’s different features, and found that those who used the site more reported greater benefit. The study results would carry more academic weight if conducted by a third-party group, Wicks noted, but doing the research in-house was quicker and cheaper.
Next, Wicks said he would like to look at user experience over time, and investigate how people respond to changes in the website. For example, when a person uses key words—such as “Prozac”—in a forum posting, PatientsLikeMe now hyperlinks the word to the data it has collected on Prozac use. In addition, Wicks is interested in pursuing how different patient groups use the site to deal with their specific concerns. For example, self-harm is an important issue for those in the mood disorders group; in the current study, 26 percent of those users using PatientsLikeMe reported reduced thoughts of self-harm.—Amber Dance
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