UNIVERSITY PARK – Researchers in the College of Information Sciences and Technology have been working with directors of the American Cancer Society to gain a better understanding of the dynamics and functioning of online communities for cancer survivors and their families and to eventually develop innovative computing technologies to better support the needs of these communities.
Nearly 80 percent of American adults use the Internet to obtain health-related information, said Kang Zhao, a doctoral candidate in the College of Information Sciences and Technology (IST), and online forums are important sources of social support for cancer survivors and their informal caregivers. According to the American Cancer Society, cancer accounts for nearly one in every four deaths in the U.S. The International Agency for Research on Cancer reports an estimated 7.6 million cancer deaths worldwide in 2008.
Zhao has been conducting research under the Cancer Informatics Initiative launched in 2010 by an interdisciplinary group of faculty from Penn State and Purdue working in collaboration with staff from the American Cancer Society (ACS). Researchers from the College of IST include John Yen, director of strategic initiatives and professor of information sciences and technology; Prasenjit Mitra, associate professor of information sciences and technology; Dinghao Wu, senior lecturer and research scientist; Baojun Qiu, a doctoral alum and senior research scientist at eBay; and Cornelia Caragea, post-doctoral researcher in the College of IST.
“Our collaboration with the College of IST provides a unique opportunity to study online community dynamics in a completely new way,” said Greta Greer, director of survivor programs at the ACS. “We are excited about the findings to date and the potential for their practical application.”
One paper written under the Cancer Informatics Initiative, “Get Online Support, Feel Better-Sentiment Analysis and Dynamics in an Online Cancer Community,” examined a large number of posts from the ACS online community and demonstrated the positive benefits members derived from participating in the online peer support community. This is the first research to clearly demonstrate and quantify the benefits of online health community participation and support the investments ACS has made in creating and maintaining the community.
“The society’s online community has a huge membership base,” said Kenneth Portier, managing director of the Statistics and Evaluation Center at ACS. “I think our research will help build a more active, sustainable online community.”
The ACS online community has about 150,000 registered members who create more than 60,000 posts a year. The emotions expressed in members’ initial posts often reflect the distress commonly experienced by people dealing with cancer and their families.
“Our research provides scientific evidence that the replies of other community members to an individual’s initial post help that individual feel better about his or her situation,” Portier said.
Through text mining and data analysis, the Penn State researchers can identify key characteristics of influential members in online health communities. According to Mitra, an influential member frequently alters the opinions or emotions of the individual initiating a discussion thread. Evidence of influence, he said, is seen when the initiator follows up their initial post with subsequent posts that display a change in sentiment.
In addition, Yen said, influential members generally respond quickly to posts and make positive statements. Leaders in online communities, Zhao said, also “give realistic suggestions in the proper context.”
The research suggests that influential members play important roles in building community in online forums and can encourage the participation of other members. The early identification of potential community leaders enables community managers to facilitate their growth and maintain strong community leadership. This is especially important in an online cancer community, in which attrition is relatively high for reasons such as resolution of the crisis that brought them into the community, change in their cancer or treatment status, or death.
“We believe our research has the potential to help the community become more sustainable against the inevitable attrition of members,” Zhao said.
The Cancer Informatics Initiative is continuing, with Zhao looking to study how opinions expressed in online forums affect members’ treatment and lifestyle choices. Yen suggests that the data analyses can potentially be used to develop personalized recommendations for members, connect them to relevant resources and modify existing evidence-based interventions. At the same time, Mitra is working “to build a better search engine in order to help people find the information they need”.
Stephanie Koons, Penn State University