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according to a study in the Journal of Medical Internet Research. Focused on chronic disease care, this strategy breaks down the boundaries between online communities for doctors and patients to promote better care and empower patients to take better care of themselves.
The Dutch study examines three different types of online health communities (OHCs) in which patients with Parkinson's disease (PD) participate. All are used in association with ParkinsonNet, a professional network that includes physicians and allied health professionals who treat these patients.
In general, the authors define an OHC as "an Internet-based platform that unites groups of individuals with a shared goal or similar interest regardless of their whereabouts." That could include patients with a particular condition, a group of healthcare professionals with a shared medical interest, or both. Through an OHC, these people can interact via blogs, chats, forums and/or wikis.
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The best-known example of such a community in the U.S. is PatientsLikeMe, which encompasses multiple forums for patients with various conditions. Physicians here have their own online communities, such as Sermo and KevinMD.
In Holland, "closed" OHCs -- which include groups for PD, dermatology, stroke, MS, rheumatoid arthritis, fertility, and cancer care -- are accessible either to healthcare professionals only, or to professionals and patients if they're connected to a particular clinic. All participants may contribute to forums, but care teams don't answer individual patient questions because of privacy concerns.
"Open" OHCs, also known as community forums, may include patients, their caregivers, and healthcare professionals. In the open OHC for Parkinson's disease, patients use the community forum for online peer support and discussions with health professionals, according to the study. Often, it points out, fellow patients provide useful answers, which may alleviate the pressure on health professionals.
Another type of online community, known as the personal health community (PHC), is governed by an individual patient who can invite providers and caregivers to participate. In a PHC, the patient can communicate online with his or her care team about particular health problems. The PHC includes a personal health record that can be accessed by the patient's care team.
The chief advantages of OHCs, according to the report's authors, include facilitation for the exchange of medical experience and knowledge; enhancing interdisciplinary collaboration across institutions and traditional echelons; providing a platform to support self- management; and the ability to improve patient-centered care.
"OHCs offer a platform for supporting medical decision-making and interdisciplinary collaboration across professionals caring for complex patients," the authors said. "OHCs enable communication between community members who are not able to have face-to-face interaction at any point in time. Moreover, OHCs bridge geographical distances and enable interaction across institutions and traditional echelons."
While this sounds like the kind of professional collaboration that an accountable care organization -- rather than a social network -- is designed to promote, the authors also point out that OHCs are structured to engage patients. "Chronic patients using online communication tools become more knowledgeable, feel better socially supported and empowered, and have improved behavioral and clinical outcomes compared to nonusers," they explained.
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.