Background CreakyJoints (CJ) is an international online arthritis patient community offering support, blogs, education, advocacy and the opportunity to participate in research.
Objectives To identify willingness to participate in research among rheumatoid arthritis (RA) patients in an online community.
Methods CJ patient community completed an online form preparatory to launch of a PCORI-funded research network (ArthritisPower.org). The online survey captured self-reported demographic, diagnosis, treatment, and willingness to participate in research.
Results As of January 2016, a total of 8923 patients had registered. Among respondents, 2147 identified themselves as patients who had RA; a subgroup of 970 completed the survey on willingness to participate in research. Demographics (N=2147): Respondents were mostly female (93%) and white, non-Hispanic (85%) with mean age of 51.7 years (SD 11.6). Conditions & Treatments (N=2147): The most frequent concomitant conditions reported by RA respondents were osteoarthritis (32%), fibromyalgia (31%), and osteoporosis (13%). A majority reported taking a classical DMARD (e.g. MTX) (59%) or a biologic (50%) including anti-TNF biologics (33%); only 23% indicated they were taking neither. Willingness to Participate in Research (N=970): Most patients (68%) had never taken part in research. Among U.S. respondents, a majority (75%) would refuse to participate in research that requires sharing Social Security Number (SSN) and 50% for the last 4 digits of SSN compared with only 20% for email and 34% for medical records. Top 3 reasons patients would not be interested in being part of medical research were: project not recommended by doctor (30%), individual results may not be kept private/confidential (28%), and project will take a lot of time (25%). Table 1 shows percentage of patients interested in research based on the source of the invitation.
Conclusions Results from this patient community survey indicate substantial willingness to participate in rheumatology research yet identify a number of potential barriers. Considering patients as unique stakeholders is vital to maximize the relevance and patient-centeredness of future research endeavors.
Disclosure of Interest None declared