Article type
Year
Abstract
Background:
The Pediatric Parent Advisory Group (P-PAG) was developed in response to the growing shift towards patient-oriented research that actively engages patients and families in healthcare decision-making.
Objectives:
The purpose of the P-PAG is to provide advice, guidance and knowledge from a parent perspective to inform and improve research initiatives.
Methods:
Recruiting for P-PAG started in June 2016 and is ongoing. Recruited parents completed a brief orientation and introduction to become familiar with the operations of the P-PAG. Members volunteer their time and meet bimonthly, undertaking one or several of the following activities:
1) Evaluating digital information tools on common pediatric conditions for parents/families.
2) Providing input on research processes to develop resources and decision-making tools for parents/families, physicians and nurses.
3) Providing input on how to involve parents/families in the research process.
4) Identifying parent priorities for research.
5) Contributing to building the framework for a sustainable P-PAG.
We also conducted a concurrent engagement evaluation of the P-PAG involving regular, short, anonymous questionnaires.
Results:
The P-PAG has contributed to six initiatives and was instrumental in the creation and evaluation of several knowledge translation (KT) tools (videos and infographics) on pediatric procedural pain, croup, acute otitis media and fever. P-PAG members evaluated the utility and design of the KT tools, which were then modified and adapted based on their feedback. The P-PAG has also been accessed by researchers to act as collaborators on grant applications and advisors on research instrument development. We will share the results of our engagement evaluation, our experiences and considerations in creating and maintaining this research partnership to ensure ongoing meaningful contributions.
Conclusion:
Family engagement is integral to children's health care. P-PAG's advice and direction to the research team are instrumental in ensuring the application of research evidence is appropriate, relevant and accessible by parents and families.
Patient or healthcare consumer involvement:
To date 14 members have joined the group and seven meetings have been held. The P-PAG is a self-governed group who decide which research projects they collaborate on.
The Pediatric Parent Advisory Group (P-PAG) was developed in response to the growing shift towards patient-oriented research that actively engages patients and families in healthcare decision-making.
Objectives:
The purpose of the P-PAG is to provide advice, guidance and knowledge from a parent perspective to inform and improve research initiatives.
Methods:
Recruiting for P-PAG started in June 2016 and is ongoing. Recruited parents completed a brief orientation and introduction to become familiar with the operations of the P-PAG. Members volunteer their time and meet bimonthly, undertaking one or several of the following activities:
1) Evaluating digital information tools on common pediatric conditions for parents/families.
2) Providing input on research processes to develop resources and decision-making tools for parents/families, physicians and nurses.
3) Providing input on how to involve parents/families in the research process.
4) Identifying parent priorities for research.
5) Contributing to building the framework for a sustainable P-PAG.
We also conducted a concurrent engagement evaluation of the P-PAG involving regular, short, anonymous questionnaires.
Results:
The P-PAG has contributed to six initiatives and was instrumental in the creation and evaluation of several knowledge translation (KT) tools (videos and infographics) on pediatric procedural pain, croup, acute otitis media and fever. P-PAG members evaluated the utility and design of the KT tools, which were then modified and adapted based on their feedback. The P-PAG has also been accessed by researchers to act as collaborators on grant applications and advisors on research instrument development. We will share the results of our engagement evaluation, our experiences and considerations in creating and maintaining this research partnership to ensure ongoing meaningful contributions.
Conclusion:
Family engagement is integral to children's health care. P-PAG's advice and direction to the research team are instrumental in ensuring the application of research evidence is appropriate, relevant and accessible by parents and families.
Patient or healthcare consumer involvement:
To date 14 members have joined the group and seven meetings have been held. The P-PAG is a self-governed group who decide which research projects they collaborate on.