In early stages of a project, the role of the researcher is to engage PFAs or PFACs in discussions to understand how patients and families define health care quality, determine where gaps exist between what patients and families know or want to know about a topic and what has been previously studied, and generate or refine a research question(s) to study. Effectively engaging PFAs takes much thought and experimenting with different ways to ask questions to gather the fullest picture. Most researchers who have engaged patient and family stakeholders state that a combination of strategies such as asking questions, reflecting, brainstorming, and guided storytelling works best.

Guided storytelling is a valuable tool to gather information. The methodology involves asking questions that elicit personal stories about a topic. Through stories and personal reflections of patients and families, a researcher can gain a better understanding of how patients and families view:

  • The burden and/or stigma of illness and injury
  • Health care quality
  • How different treatment options impact patients and families
  • Gaps that exist in care and services
  • The “ideal” health care experience
  • The experience of being a research study participant
  • What future research findings may mean

Guided storytelling can also nurture the relationships among the PFAC, PFAs, and researchers by developing a deeper understanding and appreciation for each other’s views, perspectives, and priorities.

Highlight from the Field: Pediatric Health Services Research Fellowship Program Partnership

Based at Boston Children’s Hospital, a unique research fellowship was created that teaches fellows how to engage parents and teens in research. Parent and teen advisors are engaged across all levels of the fellowship. One part involves providing project feedback based on fellows’ presentations of their work. Initially, fellows felt challenged in framing questions for advisors in ways that would yield meaningful discussion and helpful feedback. Faculty mentors provided training with guidance on how to construct questions to effectively engage advisors in health services research. Fellows returned to meetings prepared with specific questions that were more thoughtful and intentional eliciting experiences and stories from teens and parents that improved research project design, implementation, and dissemination. An added benefit, fellows stated that presenting research to parent and teen advisors during meetings and the resulting impact of their feedback helped to build and improve communication skills with their patients in clinical care.