Facing a serious illness is daunting, especially when facing it alone. Online health communities offer support for those seeking safe spaces to discuss the emotional and logistical struggles that result from a medical diagnosis. Assistant Professor Joshua Introne with the Department of Media and Information and his team are in the process of building a platform that will improve access to online social support groups for those diagnosed with HIV/AIDS.
HIV, or human immunodeficiency virus, is a disease that attacks the body’s immune system. AIDS is the final stage of HIV. Unfortunately, HIV/AIDS has an ongoing history of stigmatization. This issue, coupled with issues of internet access, can make it difficult for those with a positive diagnosis to connect with support groups.
“People don’t like to get into these forums because they’re worried about privacy issues,” said Introne. “What we also found is in the HIV community there’s a huge digital divide. We do all this stuff on the internet for the people who have access, but what about the people who don’t?”
Supporting HIV/AIDS Patients
Online health communities are often composed of a core of informal experts who help other members navigate the healthcare system outside of the doctor’s office. These members invest deeply in the community hubs, helping answer questions and forge connections for others who are passing through the forum.
“You might have a core of 20 people,” said Introne, “but they support a community of thousands who come in and talk to them, so they’re these really wonderful, organic communities that do a lot to help people who are living with a health condition.”
Introne’s health community research led to the design of a forum platform that combines web and SMS based technology to connect individuals with HIV/AIDS. The goal of his research is to see if clinical outcomes can be improved through social support systems.
“The most important thing you have to do if you have HIV/AIDS is to take your medicine,” said Introne. “We think if we can provide people with social support then we can improve medication adherence.”
Introne’s forum platform is funded by A.J. Boggs & Company as part of the company’s Lifa project, a public health portal designed to help people living with chronic illness manage their data in public health systems.
Crossing the Digital Divide
With the web-based part of the platform nearly complete, the next step will be to build the SMS based interference, allowing those isolated by the digital divide to still access the forum.
“We want people to be able to text into the platform if they don’t have access to data,” said Introne. “We’ll start with a core of people who have received an invite code from either a clinic or a doctor. From there we’ll give our members the ability to give codes out as they become more senior in the community. It will be invite-only, but it will be from someone else who has a positive diagnosis, so we will let the community decide who comes in ultimately.”
People who don’t receive a code will still be able to participate through a hotline interface. They will be able to text a number that will appear as a post to the forum, and anyone in that forum will be able to respond. This way, the person texting will still be able to access features and receive support without the obstacle of data usage. Once the interface is complete, beta and usability tests for the platform will be conducted through the Lansing Area AIDS Network (LAN).
At the heart of the research are the stories of people looking for support they can’t find anywhere else.
“One of the technologies we’re building into this is a narrative matching technology. We ask everyone in our forum will tell a story then based on that we’ll match people who have similar experiences,” said Introne. “There is currently no good technology for doing that, so we’re in the process of building that technology.”
By Kristina Pierson