There is increasing recognition of the need to involve the public in health research, but accounts of how best to achieve this are scarce. This article describes public involvement in the TRials Engagement in Children and Adolescents (TRECA) study, which is developing and evaluating multimedia information resources to inform children, young people and their familes about clinical trials. A dedicated group of young people with long-term health conditions and their parents met regularly throughout the study; further involvement was sought when specific input was required. Review of formal impact records and informal discussions highlighted how public involvement can positively influence research practice and the people involved. By detailing the methods of involvement used, this work also provides guidance for successfully implementing public involvement in research, and highlights challenges that should be considered in future research projects.

BackgroundThe use of at home microsampling devices, such as dried aliquots of blood and urine, for scientific research has expanded in recent years. These devices collect small volumes of biofluids which air dry and can be posted to central laboratories. In general, they are cheaper and more convenient, saving patients travel time and freeing up staff. In adult populations, this sampling method is well perceived, with >90% of samples being of adequate size and quality for scientific research. However, little literature on microsampling in paediatric populations exists. The aim of this study was to explore the perceptions and acceptability of microsampling in children and young people.MethodsOnline patient and public involvement was obtained by attending the Generation R Young Person’s Advisory Group Liverpool, to explore the perceptions of at home microsampling. During the session, the rationale and use of microsampling was demonstrated. The participants provided informal feedback during the interactive session and completed a short online questionnaire.ResultsA total of 13 children and young people attended the event and they were aged 10–17 years, of these 10 responded to an online questionnaire. The general feedback on microsampling was positive with 80% of respondents indicating they would be willing to participate in at home microsampling studies. Furthermore, 100% respondents reported being willing to provide both biofluids on a monthly basis and 40% would be willing to provide dried urine samples weekly.ConclusionsChildren and young people are supportive of at home microsampling for research purposes and this offers the possibility of widening participation to research.

There is a lack of awareness of paediatric rheumatic diseases (PRDs), among the public, and certain groups of healthcare professionals (HCPs), including general practitioners. To help improve international awareness and understanding of PRDs, World yOung Rheumatic Diseases (WORD) Day was established on 18 March 2019. Its aim was to raise awareness of PRDs and the importance of timely referral plus early diagnosis and access to appropriate treatment and support. A steering committee was established, and an external agency provided digital support. A social media campaign was launched in December 2018 to promote it, and analytics were used to measure its impact. Face-to-face and virtual events took place globally on or around WORD Day 2019, with 34 countries reporting events. Examples included lectures, social gatherings and media appearances. A total of 2585 and 660 individuals followed the official Facebook and Twitter accounts respectively, up until WORD Day. The official #WORDDay2019 hashtag was seen by 533,955 unique accounts on 18 March 2019 alone, with 3.3 million impressions. WORD Day 2019 was the first international campaign focused solely on PRDs. It demonstrated that despite awareness events being often resource-light, they can be implemented across a range of diverse settings. WORD Day has now become an annual global awareness event, facilitated by a growing network of patient, parent and professional community supporters.

Background:There is a lack of awareness of paediatric rheumatic diseases (PRDs), among the public, and certain groups of healthcare professionals, such as general practitioners [1]. To help improve awareness and understanding of PRDs, World Young Rheumatic Diseases Day (WORD Day) was established in 2019.Objectives:The aim of WORD Day, which took place on 18 March 2019, was to raise awareness of PRDs, while informing young people, families, healthcare professionals, teachers, and the public about the importance of timely referral plus early diagnosis and access to appropriate treatment and support.Methods:A steering committee was established for the inaugural campaign. An external agency was appointed to provide digital support, with an official social media campaign launching in December 2018. Social media analytics were used to measure the impact of official social media platforms. A range of branded materials were also made available (Fig 1), including an official campaign video. In addition, a specific engagement activity (#ButtonChallenge2019) was launched. This challenged participants to button up a piece of clothing while wearing gloves, to simulate the difficulties that young people with PRDs face undertaking daily activities. As part of the campaign launch, a list of suggested activities were provided, along with template press releases.Results:Several face-to-face and virtual events took place globally on or around WORD Day 2019, with 34 countries reporting events (Fig 2). Examples of events included lectures, social gatherings and media appearances. An official WORD Day tweet chat was also hosted. Regarding social media impact, between December 2018 and March 2019, a total of 2,585 and 660 individuals followed the official Facebook and Twitter accounts, respectively. Facebook posts were seen 646,000 times since the start of the campaign, with over 60,000 of Facebook reach from posts published on 18 March 2019 exclusively. A total of 270,800 impressions were observed on Twitter. The official #WORDDay2019 hashtag was seen by 533,955 unique accounts on 18 March 2019 alone, with 3,334,699 impressions. Posts with the hashtag were retweeted 1,112 times on WORD Day, with a total of 1,568 tweets recorded that day. With regards to the #ButtonChallenge2019, the challenge video was viewed for 6,700 minutes and received participation from across the world. Compared to the industry benchmark, the average engagements per post for WORD Day-related content was significantly higher compared to other medical and non-for-profit social media pages.Conclusion:WORD Day 2019 was the first international campaign focused solely on PRDs. Organic and paid social media content aided the dissemination of the WORD Day message, with Facebook proving to be the most popular social platform. Despite a wealth of different content published, authentic materials, namely video content, proved to be the most popular with users, particularly when it featured material designed by and with young people with PRDs. It was demonstrated that awareness events can often be resource-light and easily implemented across a range of diverse countries. It is anticipated that the global reach of WORD Day will increase over time as the campaign becomes more established.References:[1]Egert Y et al. Children and young people get rheumatic disease too. The Lancet Child & Adolescent Health. 2019;3(1):8-9.Acknowledgments:PReS for their financial support.Disclosure of Interests:Simon Stones Consultant of: I have been a paid consultant for Envision Pharma Group and Parexel. This does not relate to this abstract., Speakers bureau: I have been a paid speaker for Actelion and Janssen. These do not relate to this abstract., Eve Smith: None declared, Sammy Ainsworth: None declared, Veerle Buys: None declared, Wendy Costello: None declared, Yona Egert: None declared, Helen Foster: None declared, Lovro Lamot: None declared, Berent J. Prakken: None declared, Christiaan Scott: None declared

BackgroundThe European Network for Children with Arthritis (ENCA) is a pan-European network led for and by parents and young people with rheumatic and musculoskeletal diseases (RMDs). ENCA’s activities are delivered voluntarily by parents and young people passionate about improving the care and treatment of children and young people (CYP) with RMDs. This is done through education, innovation, networking and empowerment. ENCA is associated with the Paediatric Rheumatology European Society (PReS).ObjectivesENCA aims to facilitate the exchange and dissemination of information, knowledge and best practice with regards to paediatric RMDs across Europe, working in partnership with national patient organisations for CYP and families living with RMDs. ENCA also aims to provide international awareness, engagement and research opportunities.MethodsENCA is managed by a board of elected members, who are all volunteers with national patient organisations. ENCA hosts an annual conference in conjunction with PReS, inviting attendance from national patient organisations. Aside from a newly refreshed website, ENCA hosts a closed Facebook and WhatsApp group for national patient organisation representatives, enabling real-time communication and the instant sharing of knowledge and best practice. ENCA hosts an annual ‘Fun with JIA challenge’, aimed at empowering CYP with RMDs to share their story; and has been involved in establishing a new international awareness campaign for 2019, titled ‘World young Rheumatic Disease (WORD) day’. In addition, ENCA cooperates with a number of international organisations with shared goals in rheumatology, representing the paediatric voice.ResultsSince its inception in 2002, ENCA has enhanced the communication and shared learning between national patient organisations, by embedding the voice of CYP and families into research and advocacy activities. The ‘Fun with JIA challenge’ delivered since 2017 has provided CYP with RMDs across Europe with the opportunity to share their stories through film. In addition, ENCAs’ cooperation with PReS has recently facilitated the planning and launch of WORD day on March 18th, 2019. The need for a specific paediatric RMD awareness day was identified as a priority from national representatives, in light of the relatively limited attention that paediatric RMDs receive. WORD day helped to raise parental and professional awareness about paediatric RMDs.ConclusionAs parents and young people living with RMDs, ENCA has enabled individuals and national patient organisations to develop their knowledge in relation to paediatric RMDs. ENCA provides several opportunities for networking and the sharing of best practices between national patient organisations and professionals, through informal and formal activities focused on paediatric RMDs. International networking helps individuals and communities to navigate through challenges with the support of others with a shared-goal.Reference[1] Egert Y, et al. PARE0005|Brief Overview of ENCA (European Network for Children with Arthrit...