Laying the groundwork: Building relationships for public and patient involvement in pre‐clinical paediatric research

Abstract

Context: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing.Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre-clinical adolescent rheumatology research.Objective: To design a methodology for improving researcher-adolescent communications specifically aimed at mutual relationship building for PPI. Deliberate and effective preparation in advance of research involvement to improve the downstream success of that involvement. Design: A research seminar and research skills workshop conducted entirely in 'plainEnglish' for adolescents and their siblings aged 10-20. Upskilling of pre-clinical researchers for effective public involvement. Setting and participants: Study co-design between the voluntary charity IrishChildren's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10-20 years old living with arthritis, four pre-clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis. Main variables studied:Relationship building and communications for effective downstream public involvement in pre-clinical and laboratory research. Results:The methodology outlined here was received extremely positively. Both researchers and adolescents living with arthritis felt more comfortable communicating, more knowledgeable about juvenile arthritis and research, and more able to engage in co-operative dialogue.Discussion: Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre-clinical research.Conclusions: Dedicating resources to building relationships and skills necessary for co-operative research involvement can overcome some of the barriers to public involvement in pre-clinical and laboratory-based research.

Children and young people’s contributions to public involvement and engagement activities in health-related research: A scoping review

“…The PRISMA diagram below ( Fig 1 ) illustrates the article search, screening, and review process. The PPIE was undertaken as part of research conducted in the United Kingdom (n = 32) [ 18 – 20 , 22 , 36 – 39 , 42 , 44 , 45 , 47 – 67 ], Australia (n = 3) [ 14 , 43 , 46 ], United States (n = 3) [ 21 , 35 , 41 ], Canada (n = 1) [ 13 ] and New Zealand (n = 1) [ 40 ]. The majority of the articles (n = 37) were published after 2010 [ 13 , 18 – 22 , 35 – 45 , 47 – 52 , 54 – 67 ] with three published between 2000–2010 [ 14 , 46 , 53 ].…”

“…Most articles described a single health research study although four articles [ 39 , 46 , 55 , 56 ] described multiple health research studies within which PPIE was embedded. The most commonly reported research designs were qualitative (n = 20) [ 13 , 18 , 20 – 22 , 36 , 41 – 43 , 45 , 48 , 50 , 51 , 53 , 54 , 57 – 59 , 63 , 65 ] and mixed-methods (n = 11) [ 14 , 35 , 39 , 40 , 46 , 47 , 55 , 60 , 64 , 66 , 67 ]; of these studies, five (qualitative n = 1, and mixed methods n = 4) drew on a participatory methodology [ 35 , 36 , 41 – 43 ]. The remaining studies included randomised control trials (n = 4) [ 19 , 37 , 38 , 44 ], case study (n = 2) [ 49 , 52 ] or systematic review (n = 1) [ 61 ].…”

“…Overall, there was the greater clarity in reporting on the aim of the PPIE (n = 39) [ 13 , 14 , 18 – 22 , 35 – 43 , 45 – 67 ], the demographics of the PPIE populations involved (n = 35) [ 13 , 14 , 18 – 22 , 35 – 39 , 41 , 42 , 45 – 52 , 54 – 56 , 58 – 67 ] and the methods used to engage young people in PPIE (n = 40) [ 13 , 14 , 18 – 22 , 35 – 67 ]. The clarity of reporting was mixed on the PPIE definition used (n = 22) [ 13 , 18 , 20 , 22 , 37 – 39 , 41 , 43 , 45 , 47 , 48 , 50 , 51 , 53 , 58 , 60 – 63 , 66 , 67 ], the impact of PPIE (n = 28) [ 13 , 14 , 18 – 22 , …”

“…The clarity of reporting was mixed on the PPIE definition used (n = 22) [ 13 , 18 , 20 , 22 , 37 – 39 , 41 , 43 , 45 , 47 , 48 , 50 , 51 , 53 , 58 , 60 – 63 , 66 , 67 ], the impact of PPIE (n = 28) [ 13 , 14 , 18 – 22 , 35 , 36 , 38 – 41 , 43 – 46 , 49 , 52 , 54 , 55 , 60 – 66 ], contextual and process factors affecting PPIE (n = 26) [ 13 , 18 , 19 , 21 , 22 , 35 – 39 , 41 , 43 , 45 , 46 , 50 – 55 , 60 – 63 , 66 , 67 ] and critical learning from the PPIE (n = 27) [ 13 ,…”

Engaging patients and stakeholders in preresearch: findings from the Pipeline to Proposal Awards Initiative

“…There is awareness of the need for patient and stakeholder engagement in research. What is missing is an understanding of how to best accomplish and implement this [28]. Based on P2P, we learned there is an important role for ongoing technical assistance, in addition to training, throughout the preresearch process to help partnerships build capacity to conduct PCOR.…”