Developing a parent advisory group to inform a knowledge translation research program

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (3)

Date: 

Sunday 16 September 2018 - 15:00 to 15:20

Location: 

Ochil 2

All authors in correct order:

Scott S1, Elliott S2, Wu X1, Hartling L3
1 Faculty of Nursing, University of Alberta, Canada
2 Cochrane Child Health, Canada
3 Alberta Research Centre for Health Evidence, Faculty of Medicine and Dentistry, Cochrane Child Health, Canada
Presenting author and contact person

Presenting author:

Sarah Elliott

Contact person:

Sarah Elliott
Lisa Hartling
Abstract text
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.

Relevance to patients and consumers: 

We have developed several evidence-based, user-friendly knowledge tools targeting parents and families on common acute pediatric conditions (e.g., gastroenteritis, ear infection, croup, etc.) in Canada. For tool development, we involve and engage parents and families (Pediatric Parent Advisory Group) in every stage of the process to inform, empower and influence their healthcare decision-making.