Can low computer literacy limit a person’s ability to benefit from a health support system? A new study from Stephen J. Lepore, professor and chair of the Department of Social and Behavioral Sciences, found that less tech-savvy people may not get the full benefits of an online health service. The push toward more technology in patient support may risk bringing the “digital divide” to healthcare.
The study, funded by the National Institutes of Health and published in the European Journal of Cancer Care, set up internet support groups for breast cancer patients. The results showed that less digitally literate women participated less in the online groups and reported more distress than others even after online-chat support sessions that were designed to minimize their worries.
“If we're going to turn to technology as a sort of panacea for our problems, in this case delivering support to cancer patients, what do we need to be aware of? What are the limitations of this approach?,” Lepore said. “We need to pay attention to whether technology is going to create a sort of access gap.”
From wearable devices to telemedicine apps, digital tools are becoming a common way to help people stay healthy. Internet support groups have flourished, connecting people who face similar issues but may be physically far apart. One estimate placed the number of internet support groups for cancer at more than 400,000. In these groups, patients facing particular kinds of cancers can connect with others around the world to share information about symptoms, medical options and coping strategies.
“Increasingly, we are moving to digitally mediated delivery of care, whether it's reminding people about appointments, helping them easily refill prescriptions, giving them information about upcoming procedures,” he says. “We see clinicians saying, ‘let's take advantage of technology to reach cancer patients who can't drive into the clinic to talk with a nurse, who because of geography or illness cannot readily get face-to-face care.”
For this study, Lepore and his team enrolled women who had been treated for stage I or II breast cancer within the prior 36 months, ages 21 to 65. Their ages and education levels were captured. Each was assigned a digital literacy score based on answers to questions like “When you use the Internet, do you know how to discern credible information?” and “Do you know how to use communication tools?”
The study set up internet support groups that offered online group discussion boards as well as live online chat rooms on prearranged topics like managing symptoms. All participants were given initial training in how to use the system.
Women with lower digital literacy scores had less input in the groups, measured by lower word counts typed into the system while logged in. They also had higher computer anxiety and maintained higher distress levels both before and after their sessions.
“Their psychological symptoms did not improve as much as for others,” Lepore says. “They did benefit, just not as much.”
Lepore’s study found that the breast cancer survivors with lower education levels had lower digital literacy, and those women derived less emotional support from the internet groups. He suspects socio-economic factors play a role. In a separate project of his involving a mobile app for smoking cessation, he found that while most people have mobile phones, their access varies.
“People’s phone plans run out of minutes, so they don't look at the phone for a couple of weeks until the minutes reactivate the next month,” he says. “Or their phone gets broken. There can be barriers we're not aware of.”
One positive sign, he says, is that even women who struggled using the system persisted.
“What that says to me is that there is a motivation. That's really important, because it says that if you're going to set up these systems, there will be uptake, because there is interest in what they can provide to people,” he says. “So no matter what your application is, if you're trying to get people to use it, make it easy enough for anyone to use.”