Involving children and young people in clinical research through the forum of a European Young Persons’ Advisory Group: needs and challenges

Gaillard, Ségolène; Malik, Salma; Preston, Jennifer; Escalera, Begonya Nafria; Dicks, Pamela; Touil, Nathalie; Mardirossian, Sandrine; Claverol-Torres, Joana; Kassaï, Behrouz

doi:10.1111/fcp.12360

Cited by 44 publications

(68 citation statements)

References 8 publications

(14 reference statements)

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“…However, we chose to use 'YPAG' because it is a standard term used for groups where children and young people are involved in shaping research. To further extend reach and impact, we have worked to integrate the NeurOx YPAG into various national and international consortia, including GenerationR Alliance, 30 the European YPAG network 35 and iCAN, all of which provide useful platforms for training, as well as experience and resource sharing.…”

Section: A S Hort Backg Round To the Neu Rox Y Pagmentioning

confidence: 99%

Co‐producing research with youth: The NeurOx young people's advisory group model

Pavarini

Lorimer

Manzini

et al. 2019

Health Expectations

124

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Context The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people's perspectives on health and wellness‐related concerns and that involves children as ‘co‐researchers'. Young people's advisory groups (YPAGs) are a widely used method to enable young people's involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups. Objective In this paper, we provide a step‐by‐step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People's Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co‐production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact. Results We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co‐production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on‐going evaluations on the impact of the group on both the young people and the research. Conclusion Adopting a critical and reflective attitude can increase researchers' capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience's needs and priorities.

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Section: A S Hort Backg Round To the Neu Rox Y Pagmentioning

confidence: 99%

Co‐producing research with youth: The NeurOx young people's advisory group model

Pavarini

Lorimer

Manzini

et al. 2019

Health Expectations

124

View full text Add to dashboard Cite

show abstract

“…Young people advisory groups (YPAGs) are becoming more common; indeed, the International Children's Advisory Network was established in 2015 as an international network for YPAGs to increase their voice and impact on paediatric medicine and research . There are examples of adolescent involvement in clinical and social care research, but less so in biomedical research . From the researcher perspective, we view PPI as a mechanism for mutual and reciprocal learning with the goal of improving our research relevance and enhancing responsible research practices .…”

Section: Introductionmentioning

confidence: 99%

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

Costello¹,

Dorris

2019

Health Expectations

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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.

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“…PHR project such as the one described in this paper is another method by which to ensure meaningful youth engagement in research. As another example, colleagues in Europe initiated the eYPAGnet which has created opportunity for youth to contribute to approving pharmaceutical medications and guidelines for the European Medical Agency (Gaillard et al, 2018). By providing youth with a guiding role, they are able to determine their level of involvement such that the work they do will be meaningful for them and the project (Bombak & Hanson, 2017).…”

Section: Discussionmentioning

confidence: 99%

A novel way to engage youth in research: evaluation of a participatory health research project by the international children’s advisory network youth council

Tsang

Fletcher

Thompson

et al. 2020

International Journal of Adolescence and Youth

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Background: Little is known about the impact of a participatory approach in adolescent health research and the specific benefits youth derive from such experiences. This study evaluates the benefits and limitations of involving young patients as co-researchers in the creation and execution of an international participatory health research project. Methods: Standardized feedback surveys and qualitative interviews were employed to evaluate the impact of coresearchers' personal and academic growth. Participation was determined by the percentage of youth members actively engaged (75% or more), and outcome of a completed project. Results: 16 adolescents aged 13-23 years representing 9 global academic institutions participated. Eighty-one per cent of participants reported interest in health research and 100% felt that their participation made an impact on paediatric healthcare. Discussion: The shift in roles from patient to research partner is echoed in the strong conviction of the newfound possibilities of accomplishment as a group.

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Involving children and young people in clinical research through the forum of a European Young Persons’ Advisory Group: needs and challenges

Cited by 44 publications

References 8 publications

Co‐producing research with youth: The NeurOx young people's advisory group model

Co‐producing research with youth: The NeurOx young people's advisory group model

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

A novel way to engage youth in research: evaluation of a participatory health research project by the international children’s advisory network youth council

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