Data presented at EULAR 2016 highlight results of a two-phase study conducted by CreakyJoints, which included virtual focus groups followed by on online survey of its membership. The results show that “people living with arthritis are willing to participate in research (93%) and have concrete ideas about the questions that need to be answered in order for them to make informed and personalized healthcare decisions with their doctor,” according to W. Benjamin Nowell, Ph.D., director of Patient-Centered Research at CreakyJoints and lead author of both studies.
The survey was designed to better understand how arthritis patients prefer to learn about research opportunities, who they most trust to invite their participation in studies, and their level of interest in study participation. The survey also uncovered CreakyJoints members’ most pressing education/research concerns: how arthritis affects more than just your joints (86%) and what are the signs that their medication is not working (84%). These results provide the rheumatology community for the first time “measurable and actionable means to help determine what researchers investigate to better understand arthritis,” Nowell said.