Online health communities that include providers as well as patients can improve patient engagement and offer other benefits to both groups, says study.
People who join these communities seem to be highly motivated. Over a 12-month period, the study said, 54% of the Parkinson and ParkinsonNet community members generated new content or posted a comment.
But the authors acknowledged that in Holland, as in this country, financial incentives and cultural norms will need to change in order for this social networking approach to have widespread success. "The implementation of OHCs into clinical practice demands a paradigm shift in control and power, out of the hands of those who deliver care, into the hands of those who receive it," they wrote.
In the U.S., patients are more likely to share information about their own or others' health experiences on a social media site such as Facebook or Twitter than participate in online health communities. But about a fifth of respondents in a PWC survey said they'd joined a health forum or community. About 140,000 of them belong to PatientsLikeMe.
The PWC researchers said, "PatientsLikeMe demonstrates that despite privacy concerns, many consumers are open to sharing information via social media."
U.S. physicians, however, are less interested in sharing with their patients online. Most physicians who have been invited to "friend" a patient on Facebook, for example, have declined. Doctors' top social media sites include physician online communities and LinkedIn.