Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research. Issue 1 (21st July 2021)

• Record Type: Journal Article
• Authors: Christensen, Vivian; Parker, Kellee; Cottrell, Erika
• Is Part Of: Journal of clinical and translational science. Volume 5:Issue 1(2021)
• Publication Date: 2021-07-21
• Subjects: DIPEx -- qualitative -- patient narratives -- pediatric cancer -- clinical research -- translational research -- health experiences; Clinical medicine -- Research -- Periodicals; Medicine, Experimental -- Periodicals; Human experimentation in medicine -- Periodicals; 616.027
• DOI: 10.1017/cts.2021.822
• Languages: English
• ISSNs: 2059-8661

Abstract

Abstract: Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The "Database of Individual Patient Experiences" (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice.