Does Offline Culture Matter to Online Health Communities?

breast cancer support

flickr: njaanne

One reason I like reviewing emerging research is that it helps me view common issues with a new perspective.  Often an issue is “right under our nose,” but we overlook it because it has become so familiar to us.

That was my experience when I read Lesego Bertha Kgatitswe’s thesis published through the University of the Witwatersrand, in Johannesburg, South Africa. Her work explores the use of virtual support groups by women diagnosed with breast cancer.

I have read other studies about building online communities before, specifically for preventing and managing illnesses, however what struck me with Kgatitswe’s work is that it intentionally frames breast cancer as a “gendered disease” (because the majority of patients are female) and recognizes the importance of the offline social and cultural backdrop as she studied online community interactions.

Understanding the needs of the online community

According to the researcher, “The disease trajectory affects women in specific and unique ways, particularly through stages of diagnosis, treatment and recovery. Of key significance to this study is how these stages of this gendered illness experience shape the use of support networks.”

For those of us building and facilitating online communities (to help keep care costs low and care compliance and patient satisfaction high), this study brings important considerations to the forefront – the need to consider the social and cultural ramifications of having the diseases within the context of the offline community as a way to understand the needs of the online community.

We can’t confine the online community to the medical discussions of the disease alone; there must be a willingness to address the more complicated social and cultural issues, especially if they are obstacles to patient wellness.

Online forums can help women foster a sense of empowerment

This study draws from earlier research that maintains that it is often challenging for women to be on the receiving end of care. In their quest for health, women must be willing to break gender norms in order to change their role from caregiver to care receiver. Her study concluded that their interactions on the online forums helped the women “foster a sense of empowerment, social support and social engagement,” and are critical to their wellbeing and adaptation to the condition.

The use of her term “critical” to their wellbeing should make all of us in healthcare pause and consider how we can offer such strong and necessary support through online engagement with our patients. However, the road to online communities in illness management and prevention also comes with a caution.

Another finding was that online groups reduce “the dominance of medical power in the illness encounter and experience, while increasing lay interactions and networks of support” and fosters “a power shift differing from the professional control in the clinical interaction.”

The danger and benefits of increased lay interaction

For those of us working with clinics and hospitals, we can see both the danger and benefits of increased lay interaction and decreased professional interaction.

On one hand, lay interactions can be more approachable for the online community members, more cost effective for hospitals, and foster a real sense of personal responsibility and therefore achieve better compliance. However, in one of my earlier blog posts, I report on the concerning number of interactions on diabetes-focused Facebook Groups offering non-FDA approved products.

Hospitals and clinics must be able to find a balance that both empowers and informs–facilitating, but not dominating–online communities.

Solutions include offering password-protected, member-only support groups with a lay facilitator from the hospital; or designating professional staff to interact with open groups, such as Facebook groups, making sure to respond to lay interactions that are not credible.

Overall, the benefits of online communities to prevent and manage illness outweigh the challenges, and more of your patients are turning to them every day.

How we help

Hive Strategies helps health systems create HIPAA-compliant online communities for better health, lower costs and greater loyalty.

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