Researchers in Boston Children's Hospital's Informatics Program (CHIP) have published a study that utilizes social media to both augment traditional surveillance methods and encourage bi-directional conversation to encourage healthier behaviors among participants.
The study, which investigated the effects of hypoglycemia in a diabetic cohort, was published online on Feb. 11 in the journal JAMA Internal Medicine.
The study team was led by Elissa Weitzman and Kenneth Mandl, M.D.
In a statement accompanying the study's publication, Weitzman said the methodology demonstrated an effort to expand knowledge of complications of diabetes beyond the limitations of traditional data collection methods such as emergency room visit data and clinical trial reports.
"We don't know much about how populations with diabetes in general experience insulin effects and complications like hypoglycemia," Weitzman said. "Insulin is widely used, but we don't have a grasp of how many patients experience hypoglycemic episodes that are not severe enough to merit emergency treatment. Learning more about hypoglycemia requires engaging a broad pool of patients as collaborators in ― a model enabled by social media."
Weitzman and Mandl turned to a cohort of people with diabetes recruited through the online social network TuDiabetes.org. They had previously worked with the organization to develop and launch a social networking app called TuAnalyze and engage TuDiabetes members in real time, participatory surveillance of hemoglobin A1c levels, feeding back data to participants using maps and graphs. TuAnalyze is based on CHIP's Indivo personally controlled health record platform and implements controls that let users preserve the privacy of their personal health information.
Research Through Social Media
For this study, the researchers asked TuDiabetes members to use TuAnalyze to share information about the frequency with which they experience episodes of hypoglycemia. They also asked members reporting recent or severe hypoglycemic episodes for details about their lifetime experiences of significant impacts or harms, such as vehicle crashes or withdrawal from daily activities in order to avoid hypoglycemia, caused by the complication.
Of the 613 TuAnalyze users who offered up data for the study (representing about a quarter of all TuAnalyze users), nearly half reported more than four episodes of "going low" in the previous two weeks and about 30 percent reported at least one severe hypoglycemic episode ― one resulting in unconsciousness or seizure, or one which required glucagon, medical treatment and/or help from another person ― within the last year. More than half of the respondents reported experiencing more than one impact or harm related to hypoglycemia, including avoiding exercise, daily debilitating worry, and accidents or injuries.
Measures of engagement on the part of the cohort showed that the participants both exhibited great interest in the study's findings and acted quickly on them.
"People in the community picked up on the data and started talking about how to better manage their diabetes day to day," Weitzman said. "Seeing that conversation, we could make midstream corrections in how we presented the data to the community so as to increase the health impact and keep them more aware of what was going on.
"With this participatory approach, we're taking a platform developed for a research purpose and turning it into a way to help promote and manage care," she continued. "People are talking about how the results and the discussion online around them make them think about their health behaviors and care. The burden is now on us as researchers and public health practitioners to devise strategies to encourage these conversations and build tools that are impactful and effective for promoting better health outcomes."
The study was supported by the U.S. Centers for Disease Control and Prevention, the National Library of Medicine, and the National Center for Research Resources.
Source: Boston Children's Hospital