Abstract
ContextPublic 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.ObjectiveTo 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.DesignA research seminar and research skills workshop conducted entirely in ‘plain English’ for adolescents and their siblings aged 10‐20. Upskilling of pre‐clinical researchers for effective public involvement.Setting and participantsStudy co‐design between the voluntary charity Irish Children'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 studiedRelationship building and communications for effective downstream public involvement in pre‐clinical and laboratory research.ResultsThe 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.DiscussionEngaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre‐clinical research.ConclusionsDedicating 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.
Highlights
Science communication is a critical skill for public and patient in‐ volvement (PPI) in pre‐clinical and laboratory‐based research
Bottlenecks in biomedical research that prevented the potential impact of research reaching society have long been acknowledged and gave rise to an area of biomedical research designed explicitly to focus on economically viable innovations that are relevant for and useful clinical or societal applications.[5,6,7,8]. We call this type of bio‐ medical research ‘translational research’.9-12. Given that this area of biomedical research is designed at its core to promote usable re‐ search, it seems counterintuitive that PPI is still the exception rather than the norm in this area.[13,14]
The objective of this study was to design a methodology for improving researcher: adolescent communications aimed at mutual relationship building for PPI
Summary
Science communication is a critical skill for public and patient in‐ volvement (PPI) in pre‐clinical and laboratory‐based research. Bottlenecks in biomedical research that prevented the potential impact of research reaching society have long been acknowledged and gave rise to an area of biomedical research designed explicitly to focus on economically viable innovations that are relevant for and useful clinical or societal applications.[5,6,7,8] We call this type of bio‐ medical research ‘translational research’.9-12 Given that this area of biomedical research is designed at its core to promote usable re‐ search, it seems counterintuitive that PPI is still the exception rather than the norm in this area.[13,14] There are numerous guidelines for public involvement in laboratory‐based research, but very few are evidence‐based.[15,16,17] Very few biomedical journals require or ask for public involvement statements for manuscript submission, thereby impeding data collection to build an evidence base for PPI.[17,18] The reasons for the lag in PPI in biomedical research are multifactorial and include researcher believes and fears; public per‐ spectives and the biomedical system itself.[7,19,20,21,22,23] A recurring theme from researchers is a lack of peer‐to‐peer learning in this space. The objective of this study was to design a methodology for improving researcher: adolescent communications aimed at mutual relationship building for PPI
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