P161 Experiences of virtual research involvement activities: from the perspectives of young people and researchers
Authors: Lunt Laura E , Leslie Jasmine , Gnanenthiran Suruthi , Purvis Morgan , Holt Tilda Kierkegaard , McDonagh Janet E , Rheum Your ,   a national advisory group of BANNAR
Published: April 2022

Background/Aims

Your Rheum is a UK young person’s research advisory group, for those aged 11-24 years and diagnosed with a rheumatic condition. Prior to the COVID-19 pandemic, Your Rheum engaged with its members and researchers at face-to-face meetings, offering online activities to enable broader involvement. Aim(s) to explore the advantages and disadvantages of conducting research involvement activities virtually, from the perspectives of both young people and researchers.

Methods

Online surveys were sent to Your Rheum members and researchers, who have engaged with the Group virtually over the past 12 months. 8/16 young people responded and 3/6 researchers.

Results

Many young people commented on the convenience of meetings taking place virtually, allowing more young people to be involved regardless of location. Some highlighted that face-to-face meetings were often too far to travel to. For example. as one young person highlighted “no travel is required so it is much less of a whole-day commitment, meaning it is much easier and more likely that I will be able to attend.” Similarly, researchers who responded also stated the convenient aspect to conducting virtual activities. Additionally, for some young people, speaking online is easier and more comfortable than face-to-face communication; with some expressing, there is less pressure to contribute to discussions. One researcher noted a positive feature was the ability to switch cameras off, helping younger or quieter members to participate. However, a number of young people felt the opposite was true and have found virtual meetings difficult to contribute to, “it is more stressful⋯everyone is looking at you and no one else is speaking. The format of having meetings online also makes the whole event feel much more formal⋯which means that it can be quite intimidating to speak.” Difficulty building virtual relationships and connections was a significant disadvantage. This was highlighted by over half of respondents, who reported that it is easier to get to know others in person as you have the opportunity to deviate from the topic being discussed, allowing for natural conversations to occur. As one young person poignantly noted, online meetings “lacking true human connection”. From a researcher perspective, the subtle insights gained from face-to-face interactions were missing.

Conclusion

This study has highlighted strengths of conducting research involvement activities virtually. For example, logistics and convenience, and for some young people, the development of personal skills such as speaking to others. However, the formal and rigid nature of virtual meetings makes interacting and connecting with other people difficult. Moving forward, Your Rheum will take a blended approach to activities (frequent virtual meetings, as well as bi-annual face-to-face meetings). When planning virtual meetings, consideration to social interactions and opportunities to get to know one another remains important for young people.

Disclosure

L.E. Lunt: None. J. Leslie: None. S. Gnanenthiran: None. M. Purvis: None. T. Kierkegaard Holt: None. J.E. McDonagh: Consultancies; Consultancy fees from Pfizer (2018) and CSL-Behring (2021).