215. Fostering Leadership in Transitional Youth: The Making of an Adolescent Patient Advisory Board

Angel, Lucia; Lee, Isabel; Valdovinos, Erica; Uy-Smith, Elizabeth

doi:10.1016/j.jadohealth.2014.10.220

Cited by 2 publications

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“…A study that reviewed community-based participatory research publications found that only 15% of studies described partnering with youth in some phase [3]. Previous work has illustrated processes to incorporate youth into civic planning [4], patient advisory boards [5], and educational environments [6]. Publications describing adolescents as research advisors are notably missing from the empirical literature.…”

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Youth Advisory Boards: Perspectives and Processes

Moreno

Jolliff

Kerr

2021

Journal of Adolescent Health

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The United Nations Convention on the Rights of the Child requires researchers to give due weight to youth voices on matters that impact them [1]. Furthermore, global events in the past year have led to calls for increased youth engagement in revisiting policies, systems, and communities impacted by . However, most adolescent-centered research studies involve adolescents only as participants. A study that reviewed community-based participatory research publications found that only 15% of studies described partnering with youth in some phase [3]. Previous work has illustrated processes to incorporate youth into civic planning [4], patient advisory boards [5], and educational environments [6]. Publications describing adolescents as research advisors are notably missing from the empirical literature. This commentary describes key considerations for researchers interested in integrating adolescent advisors into their work and shares our team's experience developing and maintaining two youth advisory boards (YABs) with distinct purposes.

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confidence: 99%

Youth Advisory Boards: Perspectives and Processes

Moreno

Jolliff

Kerr

2021

Journal of Adolescent Health

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“…The iCAN and other platforms that serve to highlight the voices of children and youth in paediatric medicine has increased over the last decade [ 8 , 14 , 15 ]. Patient-oriented research initiatives such as the Canadian Institutes of Health Research Strategy for Patient-Oriented Research (CIHR SPOR) [ 16 ] have contributed in part to the increased involvement of this demographic [ 17 ]. Demand from public and private healthcare sectors have also driven the development of patient engagement programs [ 18 ].…”

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confidence: 99%

Facilitators and barriers to the training and maintenance of young persons’ advisory groups (YPAGs)

Tsang

Chew

Junker

2020

International Journal of Pediatrics and Adolescent Medicine

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Introduction Increasing demands from public and private healthcare coupled with national initiatives in patient-oriented research has led to an increase in avenues to allow patients to be directly involved in research. In particular, the push towards participation of children and youth has resulted in the formation of pediatric patient advisory groups with broad partnerships and consultation requests across the globe. However, there is a lack of evidence to examine the challenges in formation and training of young persons’ advisory groups (YPAGs) and management processes required thereafter. Purpose and objectives This study’s purpose is to document YPAG formation and training protocols around the world, highlight common strengths, and evaluate pitfalls and challenges. The results from this study will subsequently inform the development of standardized training protocols for children and youth to be piloted globally. Methods In this study, 17 select YPAG team leaders from 7 countries were surveyed to determine current training techniques used within existing groups. 17 youth representatives and 16 team leaders were then interviewed to gather further qualitative data on facilitators and barriers that aid or prevent successful initiation and maintenance of these groups. Qualitative interview data was coded and analyzed using NVivo by two independent reviewers (SYC, VWLT). Any inconsistencies in thematic analysis was confirmed by a third reviewer (JB). Results The most common training topics include consent and assent (64.71%), clinical trials (64.71%), and patient safety (70.59%). There are significant discrepancies to the amount of training received by each team. Most YPAGs out of the 17 groups receive no formal training (58.82%) while training sessions in the remaining 7 groups vary in both duration and frequency. Collectively, meetings ranged from 15  minutes to 6  hours long, with the majority of team meetings being 2–3  hours long (58.82%). The most common training facilitators are a positive relationship with a local hospital (82.35%) and access to a dedicated team coordinator (64.71%). 70.59% of team leaders identified a lack of access to appropriate educational materials available as a drawback to the impact of their YPAG, making this the greatest common barrier. Conclusion Bringing children and youth to the forefront of paediatric trials and clinical research facilitates appropriate patient representation in subsequent research decision-making. There is an urgency to create and implement standardized protocols for the training of children and youth, especially in preparation for national and international research consultations. This low barrier framework may be of special interest to lower-middle-income countries who wish to encourage community participation in healthcare.

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215. Fostering Leadership in Transitional Youth: The Making of an Adolescent Patient Advisory Board

Cited by 2 publications

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Youth Advisory Boards: Perspectives and Processes

Youth Advisory Boards: Perspectives and Processes

Facilitators and barriers to the training and maintenance of young persons’ advisory groups (YPAGs)

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