With the help of a private Facebook community named Autoimmune Hepatitis Research Network (AHRN), researchers tested the utility of social media for clinical trial recruitment. The researchers enrolled 29 participants in the Genetic Repository of Autoimmune Liver Diseases and Contributing Exposures (GRACE) study. Only a total of 28 were able to return the study materials within three months after stating their consent with a coordinator. After the first request itself, 79 percent of the participants submitted their medical information release forms and external medical records. However, researchers discovered discrepancies for immunosuppressant medication usage between medication records and participant surveys. It was found that the problems while employing patients for clinical studies led to a diminished knowledge of disease pathogenesis and appropriate therapeutic approaches. Apprehensions such as clinical trial enrollment costs and location inconvenience are some of the reasons that the respondents have stated, for avoiding clinical trials. However, with the usage of social media, these issues can be resolved.
The acceptance of social media as a tool in medical research by providers and health systems is a challenge in itself. The NIH’s All of Us project has been founded to remove the demographic biases that are a part of the clinical trial recruitment and disease research. The project involves bringing together patients from different backgrounds and socioeconomic cultures. This program will serve as a major source of information on chronic and acute diseases. The research ultimately stated that social media could be a useful method to advance patient-centric study on rare diseases. However, the data collection and demographic challenges must be kept in mind while using social media for clinical trial recruitment.