Category Archives: Projects

Lessons learned for online health community moderator roles: A mixed methods study of moderators resigning from WebMD communities

Our mixed methods paper on examining what happened when all staff moderators left WebMD online health communities in 2013 has been accepted to the Journal of Medical Internet Research!

Jina Huh, Rebecca Marmor, and Xiaoqian Jiang. 2016. Lessons Learned for Online Health Community Moderator Roles: A Mixed-Methods Study of Moderators Resigning From WebMD Communities. Journal of medical Internet research 18, 9: e247. [pdf]


Background: Online health community (OHC) moderators help facilitate conversations and provide information to members. However, the necessity of the moderator in helping members achieve goals in receiving the support they need remains unclear, with some prior research suggesting that moderation is unnecessary or even harmful for close-knit OHCs. Similarly, members’ perceptions of moderator roles are underexplored. Starting January of 2013, WebMD moderators stopped working for WebMD communities. This event provided an opportunity for us to study the perceived role of moderators in OHCs.

Objective: We examine OHC members’ perception of OHC moderators by studying their reactions towards the departure of moderators in their communities. We also analyzed the relative posting activity on OHCs before and after the departure of moderators from the communities among all members and those who discussed moderators’ departures.

Methods: We applied mixed methods to studying all 55 moderated WebMD communities’ posts by querying terms relating to discussions surrounding moderators’ disappearance from the WebMD community. We performed open and axial coding and affinity diagramming to thematically analyze patients’ reactions to disappeared moderators. We analyzed the number of posts and poster groups (members and moderators) over time to understand posting patterns around moderators’ departure.

Results: From 821 posts under 95 threads retrieved, a total of 166 open codes were generated. The codes were then grouped into two main themes with six total sub-themes. First, patients attempted to understand why moderators had left and what could be done to fill the void of the missing moderators. During these discussions, the posts revealed that patients believed moderators played critical roles in the communities by: making the communities vibrant and healthy, finding solutions, and giving medical information. Some patients felt personally tied with moderators, expressing they would cease their community participation. Patients also indicated that moderators were not useful or sometimes even harmful for peer interactions. The overall community’s posting activity analysis showed no significant difference before and after the moderators’ departure. The overall posting activities of the communities were declining well before the moderators’ departure. This declining posting activities might be the reason WebMD removed the moderators.

Conclusion: Compassionate moderators who provide medical expertise, control destructive member posts, and help answer questions can provide important support for patient engagement in OHCs. Moderators are in general received positively by community members and do not appear to interfere with peer interactions. Members are well aware of the possibility of misinformation spreading in OHCs. Further investigation into the attitudes of less vocal community members should be conducted.

Personas in Online Health Communities

Our paper on personas in online health communities have been accepted to the Journal of Biomedical Informatics! We will keep you updated once the paper has the final camera-ready version.

Huh J, Kwon BC, Kim S-H, et al. Personas In Online Health Communities. J Biomed Inform. 2016. In Press. doi:10.1016/j.jbi.2016.08.019.

Many researchers and practitioners use online health communities (OHCs) to influence health behavior and provide patients with social support. One of the biggest challenges in this approach, however, is the rate of attrition. OHCs face similar problems as other social media platforms where user migration happens unless tailored content and appropriate socialization is supported. To provide tailored support for each OHC user, we developed personas in OHCs illustrating users’ needs and requirements in OHC use. To develop OHC personas, we first interviewed 16 OHC users and administrators to qualitatively understand varying user needs in OHC. Based on their responses, we developed an online survey to systematically investigate OHC personas. We received 184 survey responses from OHC users, which informed their values and their OHC use patterns. We performed open coding analysis with the interview data and cluster analysis with the survey data and consolidated the analyses of the two datasets. Four personas emerged—Caretakers, Opportunists, Scientists, and Adventurers. The results inform users’ interaction behavior and attitude patterns with OHCs. We discuss implications for how these personas inform OHCs in delivering personalized informational and emotional support.


TrajectoryExplorer: Breast cancer

We are developing a tool to help patients with breast cancer make decisions. To do this, we have been conducting foundational work, including understanding how patients perceive various surgical options, such as contralateral prophylactic mastectomy (CPM), which has become a controversial topic after Angelina Jolie’s announcement.

We are comparing various sources including online health communities, national trends in uptake of surgical options, and search logs to understand how the public perceives CPM and come to understand pros and cons for various decision making points in general. We systematically developed manual annotations around characterizing patients and their posts in online breast cancer communities. These data along with clinical data will be used to develop a prediction model that will help breast cancer patients understand other patients’ trajectory in comparison with their own. We started conducting interviews with breast cancer patients to understand their needs that will be incorporated into our design.

Our students (Lead: Rebecca Marmor) were included in the final 9 teams for the Design Challenge at AMIA 2016!

Related publications:

Team members:
Rebecca Marmor, MD (Surgery resident, Project lead)
Meera Meghunathan (Medical student)
Elizabeth S. Epstein (Medical student)
Kenneth Trang (High school intern, data manager)
Xiaoqian Jiang, PhD (Machine learning)
Shuang Wang, PhD (Machine learning)
Jihoon Kim, MS (Biostatistics)
Sarah Blair, MD (Oncology)
Jina Huh, PhD (Human Computer Interaction, Social Analytics)

Preuss high school students
Mitchell Boldin (University of Michigan, MSI)