SMITH BRAIN TRUST — Online communities are helping patients find and share information and connect with each other at unprecedented levels. But can they also create social value by helping to bridge the disparities between rural and urban health care?
As part of a recent study, University of Maryland's Robert H. Smith School of Business professors Ritu Agarwal and Guodong "Gordon" Gao, and former doctoral student Jie Mein Goh, now at Canada's Simon Fraser University, asked whether online health communities can create social value, by helping to alleviate regional health disparities between rural and urban patients. "It was a novel question that has not been asked before," Agarwal says of the research, "The Creation of Social Value: Can an Online Health Community Reduce Rural-Urban Health Disparities?"
The professors say that while the question demands further study, their research did find that conversations within the online community played an instrumental role in bridging the divide, "amplifying" the health capabilities of rural users.
It works in two ways, they say. First, online communities provide a platform for rural patients to ask questions and to learn from urban patients about the nature of the disease and treatment options that might be more readily available in better-serviced settings. Secondly, they offer emotional support, similar to what's available at in-person support groups, and that can make a big difference, the researchers say, in managing disease conditions and maintaining a positive outlook, which can be crucial for longer-term health outcomes.
The disparities between urban and rural patients have been well-documented through the years, with rural residents facing a distinct lack of access to healthcare resources and knowledge. In their research, Agarwal and Gao took a closer look at that gap, and studied whether online health communities might "plausibly provide an alternative forum that transcends geographic constraints" and create a supportive social network that spans the divide.
"Obviously it's no substitute for a doctor who might need to perform a procedure," Agarwal says, "but you can understand better how to cope with your condition and also understand better what your treatment options are, because urban patients have access to very sophisticated medical resources."
In their research, Agarwal and Gao used data from an online community that was centered on a rare disease. Because of the disease's uncommon nature, the online community attracted a broad cross-section of urban and rural patients, making it an "ideal setting" to examine the value potential of social support among patients.
Through the data, they observed the interactions in the community over a 44-month period. The results showed that far more social support was sent to rural users from urban ones, which the authors say demonstrates social value creation and underscores the potential for online networks to positively influence public health.
"We truly believe that these communities can empower patients and build their own capabilities to manage their disease," says Agarwal. "It's not simply a matter of giving people treatment or access to healthcare, you want to enhance their own capability to manage their disease." This is an overriding theme in the national healthcare discussion today about how we can move toward more patient-centered healthcare.
The online communities have grown in prominence and relevance in recent years, alongside the expansion of other social media platforms, the professors say, as people become increasingly more comfortable talking candidly about aspects of their lives online.
For patients grappling with a rare disease, there is often a strong drive to find other people they can relate to. "It's a matter of desperation almost," says Agarwal. "For people who have these unique situations, sometimes the Internet is the only way to reach out widely to determine who else might be suffering."
"The power of being able to connect with others like yourself," she adds, "is enormous."
For health care providers, the online forums offer a chance to understand more fully how patients experience a disease, Gao says.
"I think doctors can learn a lot by what patients are discussing, and that can provide an important channel for them to understand how care might be delivered better," he says.
The forum also provides an outlet for the topics that patients might not feel comfortable discussing with their physicians, he says. "Especially where it relates to questioning whether doctors are doing the right thing," Gao says. "Patients do not normally confront a doctor directly. But they will talk about their concerns in the communities."
The role of the online health communities, meanwhile, is something that policymakers should pay attention to, Agarwal says.
"From a policy perspective, this is a lower-cost way of making health care more accessible for everyone, at least from the perspective of knowledge and understanding," she says. However, given the lingering urban-rural, digital, education and economic divides across the country, more must be done to train people in "less-advantaged areas of the country to use these online tools as effectively as they can."
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