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.
Original language | English (US) |
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Article number | e155 |
Journal | Journal of Clinical and Translational Science |
Volume | 5 |
Issue number | 1 |
DOIs | |
State | Published - 2021 |
Keywords
- DIPEx
- clinical research
- health experiences
- patient narratives
- pediatric cancer
- qualitative
- translational research
ASJC Scopus subject areas
- General Medicine