SAT0708 Willingness to participate in research and representativeness of an online health community and a patient organisation population with rheumatoid arthritis
Authors: R. Costello, J. McBeth, W.G. Dixon
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> Studies requiring large numbers of participants usually recruit from hospital clinics or general practice registers. These recruitment methods are expensive, time consuming and often fail to reach recruitment targets. One method to overcome these limitations is to recruit patients directly through the internet or patient organisations. However it is not known how willing people would be to take part in different types of research and how representative participants would be of the target population. <h3>Objectives</h3> To describe: 1) the willingness of users of an online health community (HealthUnlocked.com (HU)) with rheumatoid arthritis (RA) to participate in research, 2) the representativeness of HU users and patient organisation members (National Rheumatoid Arthritis Society (NRAS)) with RA compared to the general RA population identified from a UK primary care research database (the Clinical Practice Research Datalink (CPRD)). <h3>Methods</h3> A pop-up survey was embedded on HU to determine users' willingness to participate in different types of research, demographics (age, gender, employment, postcode and ethnicity) and disease duration. NRAS provided a dataset of their members' demographics and disease characteristics. People with RA were identified from the CPRD, to represent the general RA population. Willingness and characteristics of those willing to take part in research was tabulated. The characteristics of HU users and NRAS members were compared to the characteristics of the RA cohort from CPRD. <h3>Results</h3> The HU survey was live for 74 days between <sup>May and August 2016</sup> and had 1 00 112 pop-ups. 2647 people clicked on the pop-up, 900 people agreed to take part, 750 respondents had RA, of whom 135 did not provide age and gender resulting in 615 responses available for analysis. Over 80% of users were willing to complete questionnaires of different lengths, from a single questionnaire taking up to 1 min to complete, to multiple questionnaires over a number of months. 74% were willing to wear an activity tracker and 63% to use an app. Just over half (53%) were willing to take part in trials that involved visits to clinics (figure 1). Younger users were more willing to take part in all types of research, with 2% to 17% difference between those aged less than 65 years and those 65 years or over. Compared to those 65 years or over, 2% more of those aged less than 65 years were willing to complete multiple questionnaires over a number of months and 17% more were willing to provide information via an app. HU users were younger than NRAS and the general RA population (Age &lt;55 years HU: 49%, NRAS: 23%, CPRD: 23%). Both HU and NRAS had more females, 88% and 85%, respectively, compared to CPRD 70%. A total of 61% HU participants were diagnosed in the years 2010–2016 compared to 25% in NRAS and 37% in CPRD. <h3>Conclusions</h3> Participants surveyed online show high rates of willingness to participate in research studies. While broadly representative of the general RA, they were younger and more recently diagnosed and these population differences should be considered during study design. <h3>Disclosure of Interest</h3> None declared